1. Know Your Body and What to Look Out For
“I think an important part of self-care is to know what to look for,” says Terry B. Gernsheimer, MD, a hematologist and professor of medicine and hematology at University of Washington Medicine in Seattle. “To know what a petechia [a tiny reddish dot on the skin caused by bleeding] looks like [and] to be cognizant when you bump yourself, saying, ‘If a big bruise appears, I know where it came from.’”
This also means regularly monitoring your body for bruises, especially ones without known causes, says Dr. Gernsheimer. Unusual bruising or a heavier-than-usual menstrual period may indicate that your platelet count is dropping, and it may be a good idea to check in with your doctor.
2. Exercise Caution to Avoid Injury
There are certain activities you probably just shouldn’t do if you have ITP, such as high-impact mountain biking or rock climbing. But even everyday tasks may require more caution.
It’s important to be a very cautious driver, says Claudia Tellez, MD, a hematologist and oncologist in Chicago, because a car accident is likely to be more dangerous for someone with ITP. And when you’re cooking or preparing food, “Take your time, move slowly, be aware when you have a sharp utensil in your hands,” she urges. “Think about what sorts of things you can do to avoid creating that bleeding source.”
3. Be Prepared for Injuries
“The key issue is to be prepared for when a bleeding episode happens,” says Dr. Tellez, since it’s inevitable that you’ll injure yourself and bleed at some point. This means having bandages and gauze pads on hand and applying gentle pressure to cuts when covering them.
While some people with ITP are at high risk for bleeding and will need to follow stricter precautions for injuries, such as topical or oral medications, most people who have ITP can treat minor cuts in the usual manner, says Tellez.
4. Stay Active, Safely
Other than contact sports, most forms of physical activity are safe for the majority of people who have ITP, says Tellez. Still, “You need to be more deliberate about how you’re participating in your sport,” she notes. “You don’t want to exercise outdoors on a day when it’s slippery, when there might be ice.”
Activities that are particularly good choices for people who have ITP include swimming, stationary cycling, yoga, and indoor group exercise classes, according to Tellez. Running outdoors or on a treadmill is also usually fine, “as long as you’re super careful not to trip.”
5. Practice Stress Management Techniques
Yoga, meditation, guided imagery, and other mind-body practices may be especially beneficial for people who have ITP, says Tellez. “You want to have good communication between your brain and your body” to promote coordination and avoid injury, she notes. Your injury risk may also drop if these practices help you reduce stress. “In stressful situations, we suddenly get out of control,” she says. “We’re cutting potatoes and suddenly we’re not there, and that’s when you’re going to slip and cut yourself.”
Stress reduction through mind-body techniques may also help your immune system function better. “If you’re constantly anxious, your immune system is not going to be working at its best,” says Tellez. “And we want the immune system to be as calm and regulated as it can be, because it’s when the immune system is inflamed and unregulated that ITP will become more active.”
6. Watch Your Mouth
When you have ITP, it’s important to avoid ingesting anything — food, drugs, and any vitamins or supplements — that could interfere with your blood’s ability to clot.
“Medications like aspirin or ibuprofen, and some supplements like fish oil, alter the way platelets work,” says Tellez. “And so they’re going to potentially put someone at increased risk for bleeding.”
Research on foods and their effects on platelet function is limited, but pay attention to how you feel after eating certain foods, and avoid those that make you feel worse.
7. Keep People Around You in the Loop
While you might prefer to keep your ITP to yourself, doing so may jeopardize your health in certain situations, says Tellez. “Other people around you really need to know in case of emergency situations when you can’t speak for yourself. Your friends should know, your partner should know, your kids should know.”
Paramedics and other medical professionals, Tellez notes, will treat an injured person who has ITP differently, including administering platelets according to a different protocol. Sometimes, this could mean the difference between life and death.
8. Prioritize Sleep
Consistently getting a good night’s sleep helps ensure your immune system is running as smoothly as possible. “There are data that suggest your immune system is not what it should be if you don’t get enough sleep,” says Gernsheimer. “That’s part of a healthy lifestyle, and I’m sure there are many effects [on your health from sleep deprivation].”
9. Be Social and Have Fun
Doing almost anything carries a risk of injury, but it’s important not to let this get in the way of life when you have ITP. “If we lived in a bubble, we’d probably be better off in terms of acute risk,” Tellez notes. “And yet we want to find some sort of balance where people can really live their best lives but still be careful and not do reckless things.”
You should feel free to participate in most games and activities with friends, says Tellez, but you may need to modify or opt out of higher-risk choices. “If your friends decide to play football or softball, you might not be able to do that,” she notes. “Maybe you’re going to cheer on the sidelines or be the referee.”
10. Seek Education and Support
“I’m a huge fan of educating yourself to really understand what’s going on,” says Tellez. “I think it makes you more susceptible to complications if you don’t have awareness of what’s going on [in your body].”
Connecting with other people online or in a local support group can help you learn what to expect with ITP, but it’s important to make sure that any online forums you visit are moderated and supply accurate information. There are also websites that provide information on ITP in an accessible way, including the site for the Platelet Disorder Support Association (PDSA).
To get a good grasp of how to manage ITP, you should read up on the disorder. “It doesn’t have to be pages of heavy-duty literature,” says Tellez. “It’s just some basic concepts, some bullet points about things to do. Just those few things can be very helpful.”
The Takeaway
- When you are living with ITP, you can develop self care strategies to both keep yourself safe and to help manage your symptoms..
- Know your body and the signs that your platelet count is dropping and know how to lower your risk of uncontrolled bleeding, while at the same time be prepared for injuries.
- Stress management, good sleep, and staying connected to people you care about are some of the ways you can improve your emotional health because treating your whole self — mind and body — is important.
