Are Those Push-Ups in My Indoor Cycling Class Actually Doing Anything?

I’ve been trying to get into indoor cycling lately. People obviously love it, and I sort of get it—the music, the vibe, the intensity, the cardio! I’m liking it OK so far, but there are some things about these classes that sort of get to me, as a fitness enthusiast and journalist. Namely: What is going on with those on-bike push-ups? I mean, seriously…why?

Bike push-ups—which you do by placing your hands on the handlebars, bending your elbows so your torso comes toward the bars, then straightening your arms out again (and repeating over and over again to the beat of the music) as you continue to pedal with your legs—are commonplace at many indoor cycling studios, including SoulCycle.

While I can appreciate the break in monotony and the distraction from the burn in my quads, I also just don’t really get it. What’s this move even doing? Is it really a “push-up” if I’m sitting down? How much upper-body strengthening am I even getting? And is there any possible downside?

So I asked three cycling instructors to weigh in on if there’s really that much to gain—and, you know, if there’s anything to lose—by doing push-ups in the saddle. I also reached out to SoulCycle for comment, but didn’t hear back before publication. Here’s what I found out.

Trying to do push-ups on the bike can mess with your cycling form.

“We tend to view the [on-bike] push-ups as a contraindicated movement,” Darci Kruse, C.S.C.S., director of education for the National Exercise Trainer Association (NETA) and NETA-certified cycling instructor, tells SELF. In other words, the exercise “should not be taught.” Oops.

One reason is that it can throw off your cycling form. Proper pedaling involves both pushing down and pulling up with your legs. “It’s a full cycle stroke so it should be nice and smooth,” explains Kruse. Adding upper-body movement, she says, could negatively affect this ideal rhythm by introducing a jerky, disjointed motion.

Also, the level of coordination required to perform the push-ups may end up distracting you from pedaling as powerfully, Mark-Anthony Sanchez, Beaverton, Oregon-based kinesiologist, USA Cycling Level 3 Coach with Wenzel Coaching, tells SELF.

Basically, trying to do a strength move, like push-ups, while pedaling simultaneously will likely reduce the overall quality of each, Nate Dunn, M.S., exercise science, USA Cycling Level 1 Coach, and head coach/founder of Data Driven Athlete, tells SELF. “I would never combine those two,” he says.

Also, the repetitive up-and-down movement of the push-up can put some extra tension in the upper body, says Kruse, which is contrary to good indoor cycling technique. “We repeatedly say, Relax your shoulders, release tension in the upper body,” says Kruse, describing cues typically given in a class. That’s because many people, especially during the most challenging parts of an indoor cycling class, will tense their shoulders, lock their arms, and tightly grip the handlebars, she explains. This can put extra stress in your wrists and shoulders and put your spine in a less-than-ideal position (ideal meaning neutral, not arched or rounded). Tensing your upper body can further takes your focus and energy away from pedaling powerfully.

This isn’t necessarily a pressing safety issue, but if you have existing back problems or a more limited range of motion, attempting to do push-ups on the bike might be painful or uncomfortable, Dunn says. That’s even more likely if you’re on a bike that’s not fitted correctly to your body—the seat is too low, for example, or the handlebars are too far in front—says Sanchez. Doing push-ups in this scenario could trigger shoulder, back, and/or neck pain. (If you’re newish to indoor cycling, be sure to grab an instructor before the class starts so they can help you position the seat correctly.)

There’s also the risk that you could lose your balance. “You are seated on a very narrow bike that’s a little bit of an unstable surface,” explains Kruse. If you don’t have enough core stability to control your body as you perform the push-ups, there’s a risk that your hands might slip off the handlebars and you could fall forward or to the side, she says.

They may make class more interesting, but significant strength benefits are unlikely.

The biggest benefit of doing push-ups on the bike seems to be that it makes class more interesting. If you’re someone who gets bored of cycling for 45 minutes straight (I definitely do), you might welcome some extra movement to take your focus off the intense work you’re doing with your legs (yes, please). Or maybe you want another way to move to the music. Either way, pressing your arms to do push-ups along to the beat might do it for you. (Sanchez also says that the push-ups could potentially improve coordination, as you’re teaching different body parts to work in tandem.)

“I understand people incorporate it because it’s trendy and it’s fun and it’s different,” says Kruse. But beyond the excitement factor? You won’t get much—if any—strengthening benefits. That’s because the majority of your bodyweight is supported by the bike, she explains, which means during the “push-ups,” (which are a heavily modified version of an OG push-up, BTW) you’re working against very little resistance. For the average exerciser, it would take more substantial weight to actually challenge, and thus strengthen, your muscles.

It’s most effective to separate indoor cycling workouts and upper-body strength work.

In addition to on-bike push-ups, many indoor cycling classes include an arms-focused portion where participants pick up light dumbbells (think 1 to 3 pounds) and perform upper-body exercises (like shoulder raises and triceps extensions) while still seated atop the bike. Some instructors tell class-goers to stop pedaling during this portion; others encourage them to keep pedaling—the directive varies studio to studio and instructor to instructor.

Either way, Kruse doesn’t recommend this type of strength-training-slash-cycling combo either. As mentioned, the bike seat provides a very narrow base of support, which means you must have a certain level of core engagement while performing the upper-body weighted moves to stay stable and execute the movements safely.

Dunn, on the other hand, doesn’t see huge safety risks by performing these weighted on-bike moves, but he also doesn’t see much to gain. His take: “It would make more sense to focus on [cycling] class and strength training separately, perhaps by introducing basic strength movements after the [on-bike] portion,” he says. That would provide the opportunity to “focus on proper form while lifting weights rather than trying to balance awkwardly on a bike.”

To get a full-body workout that combines both, Dunn recommends doing a standard indoor cycling class without push-ups, and then hopping off the saddle and performing functional upper-body strengthening exercises, like dumbbell presses, bench presses, and push-ups, on solid ground.

Other options: bent-over rows, bent-over flys, and front raises. (This upper-body workout is a great place to start.) These moves target the mid-to-upper back and shoulders, areas that are typically tight in most people, especially cyclists, because of the forward-leaning posture the activity requires, says Kruse. Doing moves to strengthen them can help counteract some of the tension indoor cycling class can cause.

For the majority of folks, a bike should serve as cardio, says Sanchez. Strength training should remain a separate, off-the-bike activity, so that you can give each the undivided attention it deserves.

Related:

Why Do I Have Such Bad Coordination?

As the worst member of the third grade soccer team and someone who manages to trip and fall frequently (even on flat ground), I’ve long considered myself a pretty uncoordinated person.

It’s something I’ve learned to accept—and even laugh about—yet it’s still frustrating when I realize my natural klutziness holds me back, especially when it comes to fitness. I avoid trail running because I know there’s a high likelihood I’ll wipe out, I’m hesitant to try mountain biking for fear of crashing, and I decided I’m not Zumba material after several painful (emotionally) attempts.

But while my innate clumsiness and its impact on my life is obvious, what’s less clear to me is what coordination, as a skill, actually is and how it’s developed. Unlike other components of fitness—like strength, balance, and flexibility—coordination is a bit nebulous and difficult to conceptualize.

That brings me to several coordination conundrums. Why are some of us seemingly less coordinated than others? (It feels downright unfair.) How do your coordination abilities affect your performance in the gym—and in life? And perhaps most importantly, is coordination a trainable skill (i.e. is there any hope for me?!). I asked some experts to demystify the topic. Here’s what they had to say.

Here’s what we mean by coordination.

There are many ways to think about coordination, Dean Somerset, C.S.C.S., Edmonton, Alberta–based kinesiologist and exercise physiologist, tells SELF. But the most consistent way to describe it, he says, is as “the ability to perform both fine and gross motor tasks with a high degree of success.” And that could mean anything from throwing and catching a ball to playing piano to scratching your nose to something even as simple as walking, he explains.

There are many different forms of coordination depending on which body systems you need to activate to perform your desired task. For example, catching a tennis ball would involve upper-body coordination between your hands and eyes; kicking a soccer ball would involve lower-body coordination between your eyes and feet. In the gym specifically, examples of coordination-focused movements include pressing two dumbbells over your head in a straight line rather than making circles or swivels, or throwing a medicine ball at a target (say, the wall), and actually hitting that target instead of the person doing deadlifts next to the wall, he says.

“A lot of it just comes down to: Are you doing the thing or the skill that you want to do with a high degree of accuracy?” explains Somerset. “That’s essentially coordination.”

Adding more joints, velocity, and/or load to a movement can increase the coordination challenge. Squatting while raising your hands overhead, for example, involves more coordination than squatting without any upper-body motion because the former involves orchestrating more joints. Sprinting, as another example, involves more coordination than walking because the velocity of the movement is much greater, Paul Aanonson, C.S.C.S., and owner of Simple Speed Coach in northern Colorado, tells SELF. And lunging with a barbell requires more coordination than lunging with just your bodyweight because the load is much greater.

When conceptualizing coordination, stability and balance may also come to mind. And while the concepts are indeed similar and often working together to help you move efficiently, there is a difference among all three: Stability is more about maintaining the positioning of a joint or segment, balance is more about keeping your center of gravity over your base of support, and coordination is more about accurately executing a specific movement, Somerset explains.

So why am I, specifically, so horribly uncoordinated?

First, some tough news (at least for me): Coordination, on some level, is innate. Some of us are just naturally more coordinated than others and are able to further develop coordination skills more quickly.

Beyond our DNA, however, our current coordination abilities could also be a product of experience. Somerset explains that some people may have avoided coordination-oriented activities when they were younger, like gymnastics or dance, because they thought they might be bad at them. Thus, they didn’t spend much time training their coordination, and as a result, are probably less coordinated as adults. Perhaps quitting the third grade soccer team after just one (very embarrassing) season might, in some small way, explain why poor coordination has continued to plague me as an adult.

We’re also about as coordinated as we need to be for the activities we do on a regular basis, he adds. If you spend the majority of your time sitting in an office, commuting, running errands, and cooking dinner, (hi, me) you’ll probably be coordinated enough to successfully complete all of those tasks. But if you’re a competitive athlete, or regularly enjoy activities involving more complex coordination, like slacklining, mountaineering, or rock climbing, you’re likely going to have developed a higher level of coordination because that’s what your typical activities demand.

This brings me to the good news: Coordination is a trainable skill, says Somerset. Through consistent, targeted efforts, you can improve it. (More on that in a bit.)

Is poor coordination ever something to worry about?

If you’ve always struggled with poor coordination, it can definitely be annoying (trust me, I know), but it’s typically not something that’s concerning.

That said, in some cases, lifelong clumsiness could be a result of damage to certain levels of your nervous system, Elizabeth A. Coon, M.D., neurologist and movement disorders specialist at the Mayo Clinic, tells SELF. This type of incoordination is typically genetic (i.e. other people in your family would likely have similar coordination struggles), and may progress as time goes on. If this sounds like you, bring it up to your doctor, who may do a specialized test to further evaluate your situation, Coon explains.

Beyond chronic clumsiness, take note if your coordination abilities suddenly worsen or are associated with other symptoms like difficulty speaking, double vision, weakness, numbness, and/or changes with walking, says Coon. In those instances, it’s very important to see a doctor right away, she explains, as this could be a sign of a stroke, or another other serious underlying issue.

Other coordination-related red flags: If you start falling down, especially in situations where you previously would not have fallen, it’s a good idea to see a doctor, she adds. Also, if you’ve dedicated time to improving your coordination but still don’t see any results, you should probably also chat with your doctor just to make sure there’s nothing worrisome that’s thwarting your success, she advises.

Here’s why it’s maybe worth working on your coordination.

Having solid coordination helps you “be more successful at the physical challenges that you’re trying to do,” says Somerset. For example, having good coordination as you attempt a single-leg deadlift will ensure that you’re actually able to complete the exercise correctly and thus reap its intended benefits. In other words, your movements will be more effective and efficient.

Good coordination can also reduce your risk of injury, say Aanonson and Somerset. When your movements are more accurate, you’re less likely to engage muscles and tissues that shouldn’t be engaged, and you’re also more likely to be moving your body in patterns that are safe for your muscles and joints.

And good coordination isn’t just a boon at the gym; it can also make for easier, more enjoyable daily living. Simply having a high enough level of coordination to achieve the tasks you want to achieve—whether that’s playing with your kids, partaking in a game, or walking on uneven terrain without stumbling—can make you feel more successful in your own body.

Beyond that, as we age, our ability to complete physical tasks degrades, explains Somerset. By incorporating coordination-dependent activities throughout your life, you’ll build the skills and confidence to stay mobile, independent, and lessen your chance of injury as you get older.

So, how does one become less clumsy?

As mentioned, when it comes to coordination, “we’re all at different levels,” says Aanonson. Some folks are just naturally more coordinated than others and can master coordination-focused tasks more quickly.

That said, improving your coordination is “definitely easier than doing something like maximum weight lifting, or very long-duration cardio,” explains Somerset, as coordination drills are less challenging—at least physically. The mental component, however, can be tough. “It’s not something where you can just show up and go through the motions,” says Somerset. “You’ve got to pay attention to all of the stimulus coming at you and make sure you can make good decisions and react accordingly.”

In thinking about incorporating coordination work into your routine, it’s important to know that coordination shouldn’t necessarily take precedence over other components of fitness, like strength, cardio, and flexibility work. And, in fact, working on those other things will naturally make you more coordinated, too.

Unless you’re a high-performing athlete or recovering from a stroke that impacted your coordination abilities, coordination isn’t something most people need to dedicate a full training session to, Rachel Straub, exercise physiologist and C.S.C.S., tells SELF. Instead, she recommends focusing more on strength, balance, and flexibility work. Why? If you have poor strength, balance, and flexibility, your coordination is likely going to be poor, too, and “improving all of those is automatically going to improve your coordination,” she explains.

Somerset puts it another way. Coordination, he says, “is one of the more interwoven and involved components [of fitness].” So while you probably shouldn’t swap your strength training or cardio workouts for an hour of coordination drills, improving your coordination will enhance your overall fitness (and vice versa), which is why there’s no harm in adding coordination work into your usual routine if you have the time.

Here are a few coordination drills to try.

If you want to boost your baseline coordination, try incorporating drills into your warm-up or cool-down, or interspering them into your usual strength training routine, says Somerset. However you do it, start small to reduce risk of injury and better your chance at success.

A basic coordination drill would be to bounce a tennis ball against a wall and catch it with one hand. You could increase the challenge by alternating which hand catches it, and then make it even more difficult by having a friend throw the ball to you, suggests Somerset. From there, you can continue progressing it by having the friend bounce the ball to you; then repeat, but stand on one foot; then repeat, but stand on one foot on an unstable surface (like grass or gravel); then repeat while answering questions, he says.

Skipping is another good way to work your coordination, says Somerset. Try simply skipping from one end of the gym to the other, tapping each foot to the ground twice before switching legs. If you can, add in an arm swing. Though skipping may sound like child’s play, “a lot of people do struggle with it,” he warns.

Another coordination challenge: Try jumping and landing on one foot without wobbling or moving your foot. You can also try this single-leg jumping drill back and forth over a line, or over a small hurdle, says Somerset.

Balance drills are another great option. Coordination and balance, though not the same exact thing (as mentioned), usually go “hand in hand,” says Straub. And working on the latter is a good way to train and improve the former, adds Somerset. (Here are a few balance-challenging exercises you can try.)

When it comes to incorporating coordination drills, “the more variety, the better,” says Somerset. This will help you be more well-rounded in your abilities—both at the gym and in life. That said, if you want to become better at one specific coordination-centric skill—like dancing, for example—you should spend time practicing that specific skill. Doing the coordination drills described above, though helpful in improving your general coordination and a good starting place to reduce overall clumsiness, won’t necessarily make a big difference (if any) in ballet class. “There may be some crossover development between skills that are somewhat similar, but the best way to get good at a challenging skill is to practice the specific skill,” says Somerset.

With all of this info in mind, perhaps I’ll start shaking up my usual cardio and strength-focused workouts with a few skipping drills here, a few balance drills there. And maybe—just maybe—I’ll find myself braving some trail running routes soon.

Related:

Here’s What You Need to Know About the Glycemic Index

Unless you have diabetes or peruse nutrition literature for fun, you probably wouldn’t be able to explain exactly what the sciencey-sounding term “glycemic index” means. But chances are, you’ve heard the phrase and maybe even seen it on food labels, and wondered if it was something worth paying attention to.

“Traditionally, the glycemic index has been something we primarily use for people with diabetes,” Colleen Tewksbury, Ph.D., M.P.H., R.D., a senior research investigator and bariatric program manager at Penn Medicine and president-elect of the Pennsylvania Academy of Nutrition and Dietetics, tells SELF. “But most individuals without diabetes find the same principles apply to them and understand the concept intuitively.”

Here’s what the glycemic index actually is, the science behind it, and how it may be useful for you.

What the glycemic index actually is

Whenever you eat carbohydrates, your body gets to work breaking them down into its favorite form of fuel, a simple sugar molecule called glucose, which enters the bloodstream and raises the concentration of glucose in your blood. Your body has an organ called the pancreas, and when you eat carbs, it secretes a hormone called insulin to help the glucose molecules exit the bloodstream and enter your body’s cells so they can use them as energy.

How quickly a carb gets broken down into these little glucose molecules varies widely depending on the kind of carb it is, and what other nutrients you’re consuming with it. Something that’s more or less all sugar, like soda or fruit juice, is already pretty close to pure glucose, so it enters your bloodstream almost instantly, spiking your blood sugar levels. More complex carbs like an apple or a slice of whole grain bread contain starch, a more complicated structure (also a carb) that takes more work to break down to glucose, along with fiber, which slows down the absorption of glucose into the bloodstream, as SELF previously reported. As a result, these foods end up causing a more gradual change in your blood sugar levels.

The glycemic index, or GI, is a simple tool to help people evaluate how quickly a carb will enter their bloodstream by assigning it a number between 1 and 100, according to the Boden Institute of Obesity, Nutrition, Exercise and Eating Disorders and Charles Perkins Centre at the University of Sydney, which maintains the largest official international GI database. This value is determined based on how quickly the carb raises people’s blood sugar on average, Whitney Linsenmeyer, Ph.D., R.D., nutrition and dietetics instructor in the Doisy College of Health Sciences at Saint Louis University and spokesperson for the Academy of Nutrition and Dietetics, tells SELF.

A food with no carbs and little-to-no blood sugar impact (like butter or meat) would score zero, while pure glucose ranks at 100, the Boden Institute says. High-GI carbs (over 55) are digested, absorbed, and metabolized the fastest, so they cause a rapid response in blood sugar and insulin secretion, while low-GI carbs (under 55) have the opposite effect, causing minimal impact on your blood sugar, Linsenmeyer explains. So if you were looking at a graph charting your blood sugar and insulin response after eating a carb, a low GI carb would cause a relatively long, gradual curve, while a high-GI carb would cause a more dramatic spike.

What determines a food’s glycemic index

The GI of a food is determined by a bunch of factors. Some of them are unsurprising, like fiber content and fat content, since these nutrients are known to slow down the rate at which carbs break down to glucose and enter the bloodstream. Others are more unexpected.

For instance, the more a food has been cooked or processed, the higher the GI generally is, the American Diabetes Association (ADA) explains. That’s because heat and physical refining have already begun to do some of the work of breaking down the carbohydrate structures, which shaves off the time your body has to spend doing that, Tewksbury says. So, for instance, mashed potatoes will have a higher GI than a whole baked potato, which will have a higher GI than a raw potato. Even al dente pasta will have a slightly lower GI than well-cooked pasta, according to the ADA.

When it comes to fruits, the length of time they’ve spent ripening, the higher their GI is, per the ADA. (Ripening is essentially a process of fruit starches breaking down into sugars, Tewksbury says, which explains why a green banana is hard and meh-tasting, and a ripe banana is soft and sweet.) Acid content is another one—the higher the acidity, the more slowly sugars hit the bloodstream (so the lower the GI), per Merck Manuals.

To calculate the specific GI value of any one food, researchers measure a group of 10+ people’s blood sugar response for two hours after eating 50 carbs of the test food, and compare it to the group’s blood sugar response to 50 carbs of the reference food, pure glucose, over two hours, the Boden Institute explains.

One issue that’s come up in comparing the GI of different foods is the fact that, in real life, many foods don’t typically get eaten in whatever quantity equates to 50 carbs. Take watermelon, for instance. The GI value is 80, but you’d have to eat a whole lot of watermelon to consume 50 carbs’ worth. So scientists came up with a related value called the glycemic load, which reflects how much the typical serving of a food impacts blood sugar (as opposed to 50 carbs’ worth), the Mayo Clinic explains. While glycemic load is useful in practice, GI is generally is more widespread, which is why we’re sticking to that here.

Why the glycemic index even matters

Because people with diabetes either don’t make their own insulin and have to inject it themselves (in the case of type 1) or don’t respond well to the insulin their body does make (in the case of type 2), they have to monitor and manage their blood glucose levels in order to avoid having high or low blood sugar. So eating low-GI foods can be helpful in maintaining steady blood sugar levels.
Although people with diabetes tend to experience bigger spikes and drops in their blood sugar and feel the symptoms of them more acutely, people without diabetes can also feel the effects of rapid rises and falls in their blood sugar caused by high-GI foods, Tewksbury says, like tiredness and hunger.

“People can pick up on those feelings of their blood sugar rising and then crashing afterwards, so they can identify those high-GI foods and how they make them feel on their own without knowing the science behind it,” Tewksbury says. “They’ll notice that low-GI foods like oatmeal keep them fuller longer, and that high GI foods like cake keep them less full for not as long,” she explains. Or you might notice that adding peanut butter to a slice of toast keeps you fuller longer than the bread alone.

The evidence that a low-GI diet works (for some people)

As we mentioned, diets based on the glycemic index can help people with type 1 and type 2 diabetes maintain blood sugar control, according to the U.S. National Library of Medicine. This comes as no surprise given these diets encourage the foods that have a more gradual and predictable effect on blood sugar and discourage the foods that cause blood sugar to spike drastically.

Diabetes isn’t the only medical condition that’s been shown to benefit from a low-GI diet, though. There’s some pretty strong evidence that if you have high cholesterol or are trying to lose weight for health-related reasons, a low-GI diet may be more helpful than other types of diets.

A 2007 Cochrane review of six randomised controlled trials (RCTs) containing 202 overweight or obese participants found that people who followed a low-GI diet saw a greater decrease in their body weight, fat mass, total cholesterol, and LDL cholesterol than people who followed a higher-GI diet. (The study lengths ranged from five weeks to six months, with follow-ups as long as six months afterwards.) And the studies that compared people on low-GI diets without calorie restrictions to people on low-fat, calorie-restricted diets found that the low-GI dieters did as well or better on all these same measures of body weight and lipid profiles—even though they could technically eat as much as they wanted (as long as it was low-GI). Necessary disclaimer here, as with all reporting on weight loss: The research shows that the “best” diet for losing weight and maintaining that weight loss is the one that you’re likely to stick to for the long-haul, which is significantly easier said than done. And an increasing number of experts believe now that focusing on weight loss as your primary goal can be counterproductive and possibly even harmful, and that you might be better able to improve your health outcomes by focusing on other objectives—like managing your blood sugar or cholesterol, for instance.

The glycemic index’s limitations

It’s important to remember that it almost never makes sense to base your diet or approach to food off one single element. In the same way a low-fat, low-calorie, or low-carb diet is not automatically healthy, neither is a low-GI diet.

There are lots of high-GI foods that are very nutritious, and lots of low-GI foods that are not necessarily such great choices. For instance, “almost anything deep fried is going to be lower GI because of the large fat content,” Tewksbury explains. “That doesn’t mean it‘s going to be a healthier choice than a piece of fruit.”

Meanwhile, low-sugar versions of candy bars advertised to people with diabetes as “low-GI” will typically have the same amount or more calories and are often higher in fat, Tewksbury says. So if you have diabetes and avoiding a blood sugar spike is a priority for you, then it makes sense that you might want to reach for that product over a regular candy bar—but know that it’s not really offering any additional benefits.

But even for people with diabetes, a low-GI diet is not necessarily the best choice for everyone. As the American Diabetes Association (ADA) points out, carbohydrate-counting is still the most important blood-sugar management tool. (And some research indicates that the overall amount of carbs in a food is more important for predicting blood sugar response than the GI of the food.) So the ADA suggests thinking of the GI as a way to help fine-tune blood sugar management, and using whatever meal plan fits into your lifestyle and helps you meet your goals.

That applies to everyone. Whether you find the glycemic index helpful or not, it’s the overall quality and variety of foods you eat that’s most important.

Related:

9 Things No One Tells You About Having Breast Cancer

Having breast cancer is one of those experiences that’s impossible to understand unless you’ve walked through it step by terrible step. Talking about the bizarre, awful reality of having this illness with people who haven’t been there can be hard—but those who have been in your shoes can offer some real comfort and wisdom. Here, in the hopes of making things easier for others, women who have had breast cancer share what they wish someone had told them.

1. You’ll probably want to bring someone you trust to important doctor’s appointments.

It’s not uncommon to walk out of an overwhelming or emotional doctor’s appointment with basically no memory of what you talked about, says Peggie D. Sherry, 62, who’s had estrogen-positive ductal carcinoma in situ breast cancer twice. “You will walk out of there and you won’t remember what [the doctor] said, and you won’t understand what’s going on,” she tells SELF. This can be particularly rough at the start when you’re dealing with a flood of new and scary information. If you can, Sherry recommends taking someone you trust with you so they can keep a record of the discussion and offer moral support.

Another tip: Any time a medical question pops into your mind, write it down even if you don’t have a doctor’s appointment soon. That way, you won’t be scrambling right before an appointment to make sure you remember all the questions you need to ask. Plus, having the questions written down in one spot means you won’t forget them if you’re nervous while with the doctor.

2. Be prepared to deal with a lot of insurance nonsense.

In addition to having breast cancer not once but twice, Sherry has been running camps for people with cancer at all stages of the illness since 1999. Clearly, she knows a few things about dealing with this disease. One of her biggest takeaways is that the insurance situation can be a beast.

Having breast cancer means you’re probably going to be spending a lot of time dealing with different medical professionals and institutions, but they won’t necessarily all accept the same insurance plans. “You have to know that every single person that you’re dealing with is also covered,” says Sherry, who wound up with a $40,000 bill her insurance wouldn’t pay. (She was eventually able to pay it off herself.)

Wading through a ton of confusing insurance information isn’t ideal when you’re just trying to keep your head above water after a breast cancer diagnosis. Instead of asking each specialist or institution if they accept your insurance, it might help to call your insurance company to verify the coverage of as many of your care providers as possible. Here’s more information about how to prevent and handle expensive medical bills.

3. Some of your loved ones might disappoint you.

While some of your friends and family will be there for you throughout this experience, others might let you down. “Often, family members and your closest friends walk away,” Sherry says. Sherry recalls the day that her friend came to her in tears, saying “I can’t stand to watch you die” and ending their friendship. “She walked out, and I never saw her again,” Sherry says.

When Kristin M., 25, was diagnosed with stage 1 luminal B breast cancer at only 22, she was shocked and hurt when people she thought would be there for her disappeared. “For a while, it kind of affected me,” she tells SELF. Ultimately, though, “it helps you see who is truly there for you and who is a real friend,” she says.

Even people who try to be supportive can cause more stress. As Sherry points out, “It’s bad enough when people come up and they’re like, ‘How arrrrre you?’ … and you’re constantly reassuring people when you don’t know if you’re gonna die.”

All of this can be upsetting to read, because of course you’d hope that the people closest to you would show up for you in such a difficult time. But, Sherry says, the surprising—and hopeful—thing about having breast cancer is that “total strangers come to your rescue.”

4. Online breast cancer support systems can be great.

Like we said above, sometimes the only people who get it are the ones who have been there themselves. Enter: support groups. If you’re still adjusting to your diagnosis and not ready to go to a support group in real life, online options may help.

Sherry recommends CaringBridge, which she says is “like Facebook for sick people.” You can write updates on how you’re doing and receive messages of support with no pressure to interact directly. (This is great when you don’t have the emotional capacity for yet another outpouring of sympathy that somehow ends with you reassuring the other person.)

Kristin recommends a platform called Humanly, where people with cancer can write or record audio about their experiences to share with each other, knowing that they’re in a safe space where their feelings will be respected and understood.

5. Don’t be afraid to ask all the questions about treatment and surgical options.

If you’re getting a procedure like a lumpectomy (surgery to remove a tumor) or mastectomy (surgery to remove one or both breasts), it can help to ask your doctor about any possible surprises you might deal with afterward.

Nicole M., 48, wishes she’d known that getting a lumpectomy before her mastectomy would leave her with a chest indent. “It wasn’t just that I had no boobs,” Nicole, who was diagnosed with stage 0 ductal carcinoma in situ breast cancer in August 2018, tells SELF. “It was that I was concave and indented on my right side where the lumpectomy had been. It [looked] like a crater.”

Nicole dealt with another surprise when using tissue expanders to prepare for her reconstructive surgery this upcoming August. Tissue expanders are saline-filled pouches left beneath the skin post-mastectomy to create room for implants, and Nicole realized that really hot showers made the metal in the expanders uncomfortably hot, too.

Bottom line here: While there are some parts of recovery from breast cancer surgery that it’ll be hard to anticipate, asking your doctors detailed questions about the process—and reading articles like this one—may help.

6. Chemotherapy isn’t always as awful as it seems.

Some people have really grueling chemotherapy experiences, but others don’t. It really depends. But since most people only hear terrible chemo stories, it can lead to a fear of this treatment.

“When I first heard my doctor say ‘chemotherapy,’ I vividly remember picturing myself hugging a toilet and vomiting profusely, as I had seen in movies or television,” Crystal Brown-Tatum, 47, who was diagnosed with breast cancer at 35 and has been in remission for 12 years, tells SELF. “I had never known anyone personally that had gone through chemo treatment,” says Brown-Tatum, who wrote about her experience as an African-American cancer patient in her book, Saltwater Taffy and Red High Heels: My Journey through Breast Cancer.

This impression actually led her to delay treatment, even though she had stage 3A triple negative breast cancer, a very aggressive form of the disease. But once she started chemo, Brown-Tatum found that the nausea medication she’d been given worked well, and the only time she was violently ill was after her first session.

Allison C., 28, was diagnosed with invasive ductal carcinoma after finding a lump when she was 27. She also had a chemo experience that was more nuanced than she expected. “Days three through five [after chemo were] horribly bad,” she tells SELF. “But after that, I was able to go to the gym, travel—I did a lot of stuff actually!”

To get herself through those bad days, Allison kept a journal recording the medication she was on and how she felt. That way, the next time around, she could remind herself that she’d be feeling better by day six.

7. Find small ways to make treatment more bearable.

As part of her camps, Sherry helps people set up vision boards to keep them focused on their post-cancer goals. Creating tangible reminders of what you’re looking forward to or even of things that give your life meaning might help you push through emotionally.

Or you can create little rituals or treats that anchor you to a life beyond hospital appointments and medical procedures. Sari K., 44, who was diagnosed with stage 2 breast cancer three years ago, says that she always wears red Chanel lipstick to the hospital, takes work to do in the waiting room, and makes fun plans like getting a massage afterward.

8. Try to be your own best advocate.

That “try” part is important. It’s really easy to just say, “Oh, advocate for yourself in one of the hardest and most confusing times of your life!” when it can be really difficult to do so in practice. Still, it’s important to speak up for yourself when you can.
When you’re going through medical treatment for a long period of time, it’s easy to feel like you’re losing control—not just to the disease, but sometimes to the very people who are trying to help. A doctor’s job is to do everything they can to save your life, but sometimes, that can come at the expense of taking your feelings into account.

Striking a balance between listening to your doctors and following your own instincts is tricky, but there are some instances where you might have to put your foot down. Sari knows this pretty intimately.

“Every single doctor has told me, just go into menopause, you don’t need your hormones, you’re going through this, you don’t need your breasts, you don’t need anything,” Sari tells SELF. This has inadvertently made her feel like doctors are trying to strip away her womanhood, she says. “I’ve had to really learn to assert myself and my priorities to my doctors and get them to hear what I need from my point of view.”

Then there’s Allison, who decided against getting reconstructive surgery after her unilateral (single breast) mastectomy because she worried it would affect her ability to rock climb. Many doctors pushed back, she says, but she was steadfast.

“I had a lot of surgeons who thought they knew what I wanted, and I had to search around until I found this surgeon I actually went with, who’s a rock climber as well,” Allison says. “She understood what I wanted, and she did a phenomenal job!”

Doctors can advise you, but it’s your body, and you should be able to decide how it’s treated. If your doctor won’t listen and you have the resources, try to find one who will.

9. Focusing on non-cancer parts of your life might help get you through.

For example, while in treatment, Kristin got her master’s degree in forensic psychology. Allison not only got married, moved, and finished the last two months of her master’s while getting treated for breast cancer, she kept rock climbing— even setting personal records—and also started her own company selling journals to help other cancer patients record their experiences.

Ultimately, Kristin says, it helped her to believe she would survive and live to do other things. Now that she’s cancer-free, she’s making good on that promise to herself. “I call it my new chapter,” she says. “The bad one has closed, and now the new beginning is happening.”

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Scientists find thirdhand smoke affects cells in humans

Thirdhand smoke can damage epithelial cells in the respiratory system by stressing cells and causing them to fight for survival, a research team led by scientists at the University of California, Riverside, has found. The finding could assist physicians treating patients exposed to thirdhand smoke.

“Our data show that cells in humans are affected by thirdhand smoke,” said Prue Talbot, a professor in the Department of Molecular, Cell and Systems Biology, who led the research. “The health effects of THS, have been studied in cultured cells and animal models, but this is the first study to show a direct effect of thirdhand smoke on gene expression in humans.”

Study results appear in JAMA Network Open.

Thirdhand smoke, or THS, results when exhaled smoke and smoke emanating from the tip of burning cigarettes settles on surfaces such as clothing, hair, furniture, and cars. Not strictly smoke, THS refers to the residues left behind by smoking.

“THS can resurface into the atmosphere and can be inhaled unwillingly by nonsmokers,” said Giovanna Pozuelos, the first author of the research paper and a graduate student in Talbot’s lab. “It has not been widely studied, which may explain why no regulations are in place to protect nonsmokers from it.”

The researchers obtained nasal scrapes from four healthy nonsmokers who had been exposed to THS for three hours in a laboratory setting at UC San Francisco. The UCR researchers then worked to get good quality RNA from the scrapes — necessary to examine gene expression changes. RNA sequencing identified genes that were over- or under-expressed. They found 382 genes were significantly over-expressed; seven other genes were under-expressed. They then identified pathways affected by these genes.

“THS inhalation for only three hours significantly altered gene expression in the nasal epithelium of healthy nonsmokers,” Pozuelos said. “The inhalation altered pathways associated with oxidative stress, which can damage DNA, with cancer being a potential long-term outcome. It’s extremely unlikely a three-hour exposure to THS would cause cancer, but if someone lived in an apartment or home with THS or drove a car regularly where THS was present, there could be health consequences.”

Because gene expression in the nasal epithelium is similar to the bronchial epithelium, the researchers note that their data is relevant to cells deeper in the respiratory system. In the samples they studied, the researchers also found that brief THS exposure affected mitochondrial activity. Mitochondria are organelles that serve as the cell’s powerhouses. If left unchecked, the observed effects would lead to cell death.

Pozuelos explained that the team focused on the nasal epithelium because the nasal passage is one way THS can enter people’s lungs. The other common exposure route is through the skin, which the researchers did not study, but plan to in the future.

Already, the researchers are working with groups in San Diego, California, and Cincinnati to study long-term exposure to THS, made possible with access to homes where people are being exposed to THS.

“Many people do not know what THS is,” said Talbot, the director of the UCR Stem Cell Center. “We hope our study raises awareness of this potential health hazard. Many smoking adults think, ‘I smoke outside, so my family inside the house will not get exposed.’ But smokers carry chemicals like nicotine indoors with their clothes. It’s important that people understand that THS is real and potentially harmful.”

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Materials provided by University of California – Riverside. Original written by Iqbal Pittalwala. Note: Content may be edited for style and length.

Pig-Pen effect: Mixing skin oil and ozone can produce a personal pollution cloud

When ozone and skin oils meet, the resulting reaction may help remove ozone from an indoor environment, but it can also produce a personal cloud of pollutants that affects indoor air quality, according to a team of researchers.

In a computer model of indoor environments, the researchers show that a range of volatile and semi-volatile gases and substances are produced when ozone, a form of oxygen that can be toxic, reacts with skin oils carried by soiled clothes, a reaction that some researchers have likened to the less-than-tidy Peanuts comic strip character.

“When the ozone is depleted through human skin, we become the generator of the primary products, which can cause sensory irritations,” said Donghyun Rim, assistant professor of architectural engineering and an Institute for CyberScience associate, Penn State. “Some people call this higher concentration of pollutants around the human body the personal cloud, or we call it the ‘Pig-Pen Effect.'”

The substances that are produced by the reaction include organic compounds, such as carbonyls, that can irritate the skin and lungs, said Rim. People with asthma may be particularly vulnerable to ozone and ozone reaction products, he said.

According to the researchers, who reported their findings in a recent issue of Nature’s Communications Chemistry, skin oils contain substances, such as squalene, fatty acids and wax esters. If a person wears the same clothes too long — for example, more than a day — without washing, there is a chance that the clothes become more saturated with the oils, leading to a higher chance of reaction with ozone, which is an unstable gas.

“Squalene can react very effectively with ozone,” said Rim. “Squalene has a higher reaction rate with ozone because it has a double carbon bond and, because of its chemical makeup, the ozone wants to jump in and break this bond.”

Indoors, ozone concentration can range from 5 to 25 parts per billion — ppb — depending on how the air is circulating from outside to inside and what types of chemicals and surfaces are used in the building. In a polluted city, for example, the amount of ozone in indoor environments may be much higher.

“A lot of people think of the ozone layer when we talk about ozone,” said Rim. “But, we’re not talking about that ozone, that’s good ozone. But ozone at the ground level has adverse health impacts.”

Wearing clean clothes might be a good idea for a lot of reasons, but it might not necessarily lead to reducing exposure to ozone, said Rim. For example, a single soiled t-shirt helps keep ozone out of the breathing zone by removing about 30 to 70 percent of the ozone circulating near a person.

“If you have clean clothes, that means you might be breathing in more of this ozone, which isn’t good for you either,” said Rim.

Rim said that the research is one part of a larger project to better understand the indoor environment where people spend most of their time.

“The bottom line is that we, humans, spend more than 90 percent of our time in buildings, or indoor environments, but, as far as actual research goes, there are still a lot of unknowns about what’s going on and what types of gases and particles we’re exposed to in indoor environments,” said Rim. “The things that we inhale, that we touch, that we interact with, many of those things are contributing to the chemical accumulations in our body and our health.”

Rather than advising people whether to wear clean or dirty clothes, the researchers suggest that people should focus on keeping ground ozone levels down. Better building design and filtration, along with cutting pollution, are ways that could cut the impact of the Pig-Pen Effect, they added.

To build and validate the models, the researchers used experimental data from prior experiments investigating reactions between ozone and squalene, and between ozone and clothing. The researchers then analyzed further how the squalene-ozone reaction creates pollutants in various indoor conditions.

The team relied on computer modeling to simulate indoor spaces that vary with ventilation conditions and how inhabitants of those spaces manage air quality, Rim said.

In the future, the team may look at how other common indoor sources, such as candle and cigarette smoke, could affect the indoor air quality and its impact on human health.

Pink noise boosts deep sleep in mild cognitive impairment patients

Gentle sound stimulation played during specific times during deep sleep enhanced deep or slow-wave sleep for people with mild cognitive impairment, who are at risk for Alzheimer’s disease.

The individuals whose brains responded the most robustly to the sound stimulation showed an improved memory response the following day.

“Our findings suggest slow-wave or deep sleep is a viable and potentially important therapeutic target in people with mild cognitive impairment,” said Dr. Roneil Malkani, assistant professor of neurology at Northwestern University Feinberg School of Medicine and a Northwestern Medicine sleep medicine physician. “The results deepen our understanding of the importance of sleep in memory, even when there is memory loss.”

Deep sleep is critical for memory consolidation. Several sleep disturbances have been observed in people with mild cognitive impairment. The most pronounced changes include reduced amount of time spent in the deepest stage of sleep.

“There is a great need to identify new targets for treatment of mild cognitive impairment and Alzheimer’s disease,” Malkani added. Northwestern scientists had previously shown that sound stimulation improved memory in older adults in a 2017 study.

Because the new study was small — nine participants — and some individuals responded more robustly than others, the improvement in memory was not considered statistically significant. However, there was a significant relationship between the enhancement of deep sleep by sound and memory: the greater the deep sleep enhancement, the better the memory response.

“These results suggest that improving sleep is a promising novel approach to stave off dementia,” Malkani said.

The paper will be published June 28 in the Annals of Clinical and Translational Neurology.

For the study, Northwestern scientists conducted a trial of sound stimulation overnight in people with mild cognitive impairment. Participants spent one night in the sleep laboratory and another night there about one week later. Each participant received sounds on one of the nights and no sounds on the other. The order of which night had sounds or no sounds was randomly assigned. Participants did memory testing the night before and again in the morning. Scientists then compared the difference in slow-wave sleep with sound stimulation and without sounds, and the change in memory across both nights for each participant.

The participants were tested on their recall of 44 word pairs. The individuals who had 20% or more increase in their slow wave activity after the sound stimulation recalled about two more words in the memory test the next morning. One person with a 40% increase in slow wave activity remembered nine more words.

The sound stimulation consisted of short pulses of pink noise, similar to white noise but deeper, during the slow waves. The system monitored the participant’s brain activity. When the person was asleep and slow brain waves were seen, the system delivered the sounds. If the patient woke up, the sounds stopped playing.

“As a potential treatment, this would be something people could do every night,” Malkani said.

The next step, when funding is available, is to evaluate pink noise stimulation in a larger sample of people with mild cognitive impairment over multiple nights to confirm memory enhancement and see how long the effect lasts, Malkani said.

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Materials provided by Northwestern University. Original written by Marla Paul. Note: Content may be edited for style and length.

Students chowing down tuna in dining halls are unaware of mercury exposure risks

A surprising number of students eating in university dining halls have been helping themselves to servings of tuna well beyond the amounts recommended to avoid consuming too much mercury, a toxic heavy metal.

Researchers at UC Santa Cruz surveyed students outside of campus dining halls on their tuna consumption habits and knowledge of mercury exposure risks, and also measured the mercury levels in hair samples from the students. They found that hair mercury levels were closely correlated with how much tuna the students said they ate. And for some students, their hair mercury measurements were above what is considered a “level of concern.”

“It doesn’t necessarily mean that they would be experiencing toxic effects, but it’s a level at which it’s recommended to try to lower your mercury exposure,” said Myra Finkelstein, an associate adjunct professor of environmental toxicology at UC Santa Cruz. “Our results were consistent with other studies of mercury levels in hair from people who eat a lot of fish.”

Tuna and other large fish contain significant amounts of mercury in its most toxic form (methylmercury), and exposure to high levels of methylmercury can cause neurological damage. Because of its effects on neurological development and reproductive health, concerns about mercury exposure are greatest for pregnant women and children. Finkelstein said college students should also limit their exposure to mercury because their nervous systems are still developing and they are of reproductive age.

She said the study was prompted by her experiences teaching students about mercury in the environment and hearing about how much tuna some students eat. “I’ve been dumbfounded when students have told me they eat tuna every day,” Finkelstein said. “Their lack of knowledge about the risk of exposure to mercury is surprising.”

Graduate student Yasuhiko Murata led the study and is first author of a paper on their findings, which has been accepted for publication in Environmental Toxicology and Chemistry and is available online. In the surveys, about a third of students reported weekly tuna consumption, and 80 percent of their tuna meals were at the campus dining halls, where tuna is regularly available from the salad bar. Half of the tuna eaters reported eating three or more tuna meals per week, potentially exceeding the “reference dose” established by the U.S. Environmental Protection Agency (EPA), considered a maximum safe level (0.1 micrograms of methylmercury per kilogram of body weight per day).

Before the results were published, Finkelstein discussed her team’s findings with UCSC administrators who oversee the dining halls. New signs in the campus dining halls will now give students information about mercury in tuna and guidelines for fish consumption. Other changes may be made after a more thorough assessment, said William Prime, executive director of dining services.

Finkelstein said this issue could be a concern for all kinds of institutions with dining halls, especially those serving children, such as boarding schools. “Any time you have a dining hall situation where people are helping themselves, some residents may be eating way too much tuna,” she said.

Nearly all fish contain some mercury, but tuna, especially the larger species, are known to accumulate relatively high levels of the toxic metal. Consumers are advised to eat no more than two to three servings per week of low-mercury fish (including skipjack and tongol tuna, often labeled “chunk light”) or one serving per week of fish with higher levels of mercury (including albacore and yellow fin tuna).

Some of the students surveyed at UC Santa Cruz reported having more than 20 servings of tuna per week. The researchers analyzed the mercury content of the tuna being served in the dining halls, collecting samples periodically over several months, and found that the mercury content was variable, with some samples having five times as much mercury as others.

“Some chunk light tuna was actually quite high in mercury, although typically it has only half or one-third as much as albacore,” Finkelstein said.

The researchers calculated that, to stay below the EPA reference dose, a 140-pound person could consume up to two meals per week of the lower-mercury tuna but less than one meal per week of the higher-mercury tuna.

After conducting an initial survey and hair analysis, the researchers conducted a second survey with more detailed questions designed to probe students’ knowledge about mercury in tuna and recommended consumption rates. Whether they were tuna eaters or not, most students had very little knowledge about this issue, Finkelstein said. A majority of students answered that it is safe to eat two to three times as much tuna per week as is recommended.

“It was not a large sample size, but only one out of 107 students surveyed had a high level of knowledge as well as confidence in that knowledge, so I think it’s important to provide students with more information about safe levels of tuna consumption,” she said.

Recommendations regarding consumption of tuna and other fish are complicated by the fact that fish is highly nutritious and contains beneficial omega-3 fatty acids and other nutrients. In addition, mercury concentrations vary widely among different types of fish. The U.S. Food and Drug Administration and EPA have issued advice on eating fish for pregnant women, parents, and caregivers of young children.

In addition to Myra Finkelstein and Yasuhiko Murata, the coauthors of the paper include Doreen Finkelstein, a social scientist and research analyst at Foothill College in Los Altos Hills who developed the survey questions, and Carl Lamborg, associate professor of ocean sciences at UC Santa Cruz.

Toxic substances found in the glass and decoration of alcoholic beverage bottles

Bottles of beer, wine and spirits contain potentially harmful levels of toxic elements, such as lead and cadmium, in their enamelled decorations, a new study shows.

Researchers at the University of Plymouth analysed both the glass and enamelled decorations on a variety of clear and coloured bottles readily available in shops and supermarkets.

They showed that cadmium, lead and chromium were all present in the glass, but at concentrations where their environmental and health risks were deemed to be of low significance.

However, the enamels were of greater concern, with cadmium concentrations of up to 20,000 parts per million in the decorated regions on a range of spirits, beer and wine bottles, and lead concentrations up to 80,000ppm in the décor of various wine bottles. The limit for lead in consumer paints is 90ppm.

The study also showed the elements had the potential to leach from enamelled glass fragments, and when subjected to a standard test that simulates rainfall in a landfill site, several fragments exceeded the US Model Toxins in Packaging Legislation and could be defined as “hazardous.”

Published in Environmental Science and Technology, the research was carried out by Associate Professor (Reader) in Aquatic Geochemistry and Pollution Science, Dr Andrew Turner.

He has previously shown that the paint or enamel on a wide variety of items — including playground equipment, second hand toys and drinking glasses — can feature levels of toxic substances that are potentially harmful to human health.

Dr Turner said: “It has always been a surprise to see such high levels of toxic elements in the products we use on a daily basis. This is just another example of that, and further evidence of harmful elements being unnecessarily used where there are alternatives available. The added potential for these substances to leach into other items during the waste and recycling process is an obvious and additional cause for concern.”

For the current research, bottles of beer, wine and spirits were purchased from local and national retail outlets between September 2017 and August 2018, with the sizes ranging from 50 ml to 750 ml.

They were either clear, frosted, green, ultraviolet-absorbing green (UVAG) or brown with several being enamelled over part of the exterior surface with images, patterns, logos, text and/or barcodes of a single colour or multiple colours.

Out of the glass from 89 bottles and fragments analysed using x-ray fluorescence (XRF) spectrometry, 76 were positive for low levels of lead and 55 positive for cadmium. Chromium was detected in all green and UVAG bottles, but was only in 40% of brown glass and was never in clear glass.

Meanwhile, the enamels of 12 products out of 24 enamelled products tested were based wholly or partly on compounds of either or both lead and cadmium.

Dr Turner added: “Governments across the world have clear legislation in place to restrict the use of harmful substances on everyday consumer products. But when we contacted suppliers, many of them said the bottles they use are imported or manufactured in a different country than that producing the beverage. This poses obvious challenges for the glass industry and for glass recycling and is perhaps something that needs to be factored in to future legislation covering this area.”

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Materials provided by University of Plymouth. Note: Content may be edited for style and length.

6 Things You Should Know If You Live With Chronic ITP

A lot of people aren’t even aware there’s a condition that can cause your body’s immune system to go kind of haywire and attack the platelets that help your blood clot. Then there are people with chronic immune thrombocytopenia (also known as idiopathic thrombocytopenic purpura, or the short and not-so-sweet ITP) who know this very well because that’s what their bodies do on a regular basis. Since you’re reading this article, you probably have chronic ITP and might be looking for information about what really causes your condition, along with how to make living with it a little bit easier. We’ve got you covered. Here are six things experts want you to know if you live with chronic ITP.

1. Your condition is pretty rare, but there are ways to find support.

ITP isn’t super common. Around 3.3 per 100,000 adults are diagnosed with ITP each year, according to the most recent estimates from the American Journal of Hematology. Somewhere between 1.9 and 6.4 per 100,000 children are diagnosed annually.

While people with ITP make up a relatively small club, being an adult with chronic ITP puts you in the majority in a sense. When adults develop ITP, it tends to be the chronic kind that lasts for more than six months, whereas kids are more likely to get lucky and have acute ITP that resolves within six months.

Even though ITP isn’t overwhelmingly common, you’re not alone. If you’re looking for support either online or IRL, organizations like the Platelet Disorder Support Association and the ITP International Alliance have groups to help you connect with other ITP patients and resources for learning more about the disorder.

2. You can experience a range of ITP symptoms (or none).

Whether chronic or acute, ITP basically happens because your immune system, which is designed to protect you from pathogens and other possibly dangerous substances, has started to think that the platelets in your blood are harmful. To be clear, platelets are actually great. These cells promote clotting, which stops bleeding when you injure yourself. But in some cases, your spleen produces antibodies that accidentally kill these platelets, according to the National Heart, Lung, and Blood Institute (NHLBI).

That doesn’t mean every single person with ITP—or even with chronic ITP—will experience the same symptoms, or any symptoms at all. It depends on how low your platelet levels are. In someone who doesn’t have ITP, that number typically hovers between 150,000 to 450,000 platelets per cubic millimeter of blood. ITP becomes a concern if a person’s platelet levels dip below 100,000 per cubic millimeter of blood, but that still doesn’t mean you’ll show symptoms. Some people are diagnosed with chronic ITP just because blood tests have put them in that range for prolonged periods of time and doctors can’t suss out any reasons why.

If you have actually experienced symptoms from chronic ITP, what comes next might sound pretty familiar. Maybe you noticed mysterious bruises after very light contact (or no contact at all), Elizabeth Roman, M.D., a pediatric hematologist and oncologist at New York University Langone Health, tells SELF. Perhaps you were completely puzzled by the “rash” on your lower legs until a doctor explained it was petechiae, or little pinpricks of blood that sometimes dot the skin of those with ITP, according to the Mayo Clinic. Maybe your nose spurts blood way too easily when you blow your nose, you’ve noticed redness in your urine and stool, or your periods are legendarily heavy, Dr. Roman says. These are all possible ITP symptoms.

If your chronic ITP pushes you below 50,000 platelets per cubic millimeter of blood, you’re more likely to experience severe bleeding from trauma, and if you have fewer than 20,000 platelets per cubic millimeter of blood, spontaneous bleeding becomes a possibility.

3. Many people with chronic ITP still have active lifestyles.

All of this information might seem daunting, but it doesn’t automatically mean you need to change your whole life after finding out you have chronic ITP. If you technically have chronic ITP but your platelet levels are above 30,000 per cubic millimeter of blood and you don’t have any symptoms, your doctor might just monitor you without administering treatment, according to the Merck Manual. (We’ll discuss what treatment would look like in just a bit.) Even if you do have some ITP symptoms, you might just need to be a little more cautious when going about your daily life.

For instance, depending on your platelet count and treatment situation, your doctor may recommend staying away from contact sports (like boxing and soccer) if they could put you at risk for internal bleeding, according to the NHLBI. You should also consider using gloves while slicing and dicing in the kitchen, and your doctor may advise you to avoid over-the-counter medications, like ibuprofen, that might increase your risk of bleeding, the NHLBI says.

Overall, you should use good judgment when you’re doing activities that might increase your risk of trauma. This could mean making sure you’ve got your helmet on if you decide to go on that bike ride or sitting out that Instagram-worthy horseback riding trip if you haven’t chatted with your doctor first.

Finally, if you do get a cut—even a small one—that really won’t stop bleeding even after applying these first aid measures, you should get medical attention immediately, the Mayo Clinic says.

“You just have to take precautions, and make sure you go to the ER if you do notice any significant bleeding anywhere,” Rahki Naik, M.D., M.H.S., associate director for hematology and oncology fellowship at Johns Hopkins Medicine, tells SELF.

It might seem like we’re telling you to absolutely slow down, but that’s not entirely true. When in doubt about what you can and can’t do with chronic ITP, talk to your doctor—especially if the activity in question is a little bit, uh, precarious. “For someone who wants to go on a rock climbing trip or skiing, we’d like them to have sufficient platelets to be able to do these activities safely,” Dr. Roman says. “So we may treat for a specific event.”

4. You should ask your doctor if you need to change your alcohol intake.

If your platelet count is below 50,000 platelets per cubic millimeter of blood and/or you’re getting treated for ITP, Dr. Naik recommends not doing anything that will make things worse, including drinking excessively. This is because having too much alcohol might suppress your bone marrow’s ability to produce platelets, Dr. Naik says. Since chronic ITP is already messing with your platelets, you should definitely ask your doctor how much (if any) it’s OK to drink.

Generally, if your doctor considers your platelet count stable, Dr. Naik says they may tell you it’s OK to drink moderately (which is up to one drink a day for women and up to two for men, according to the Centers for Disease Control and Prevention). “Excessive or binge drinking is not advised,” she adds.

5. Various factors can make your platelet count fall more.

As we’ve mentioned above, many people with ITP don’t have to make drastic changes to their daily lives. Even people who have had some major dips in their platelet count sometimes find that their ITP symptoms normalize over time and with treatment, Dr. Naik says. But every once in a while, some seemingly random thing might trigger your platelet count to fall, she says.

Infections like HIV, hepatitis, and H. pylori (which causes stomach ulcers), can all make your immune system get confused and start attacking platelets, according to the Mayo Clinic. It turns out that pregnancy can also impact your platelet count, so if you have chronic ITP and are expecting, chat with your doctor to make sure that you’re taking care of yourself, the NHLBI says. While your ITP diagnosis shouldn’t have a major impact on the baby, your doctor will want to monitor you throughout your pregnancy, and they’ll definitely want to make sure that you’re not losing too much blood when you’re delivering, the Mayo Clinic explains.

There’s also a link between ITP and autoimmune disorders like lupus, which is a disease where your body attacks its tissues and organs, the Mayo Clinic says. Other disorders that are ITP risk factors include Sjogren’s syndrome, which happens when your immune system targets the glands responsible for producing saliva and tears, and rheumatoid arthritis, which is a disorder that causes the immune system to damage the joints.

If anything along these lines seems to be triggering or exacerbating your chronic ITP, your doctor will probably want to treat that. Be sure to communicate with them about other conditions you think might be impacting your platelet levels.

6. Treatment for chronic ITP does exist.

If you do require treatment, your doctor might consider medications to help you raise your platelet levels, the NHLBI explains. Additionally, you might be prescribed immunosuppressants, which are medications that can help stop your immune system from attacking the platelets in your blood.

In the rarer cases when these types of measures don’t work, doctors sometimes suggest a splenectomy, which is the removal of your spleen, the NHLBI explains. ITP patients who have had splenectomies often return to safe platelet levels, but having your spleen removed does increase your risk of infection overall, so that’s something your doctor can help you navigate.

We know that getting a chronic ITP diagnosis can be a little freaky. Between possible mysterious bruises and the low platelet count, it might even be downright scary. Overall, there’s a good reason to be optimistic, though: Most adults with chronic ITP see their symptoms become stable within five years of getting diagnosed, according to the Merck Manual, and some people even spontaneously recover. But if that’s not you (yet), remember that although chronic ITP isn’t curable, doctors do consider it to be a very treatable condition. “[ITP] tends not to be this very dramatic thing for your entire life,” Dr. Naik says. “It does get better.”

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