Having a rare, long-lasting condition like chronic immune thrombocytopenia (chronic ITP) can leave you with lots of questions. There’s no substitute for your healthcare provider’s explanation of your diagnosis. But there are some basics about chronic ITP you should know about.
Chronic ITP often shows up as abnormal bleeding. Heavy nosebleeds, unexplained bruising and tiny red or purple dots on your skin called petechiae are all signs. These symptoms mean you don’t have enough platelets to form clots and stop bleeding. The bruises and dots are where broken blood vessels have bled beneath your skin.
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Many people panic when they learn that there’s a problem with their blood. It’s easy to jump to conclusions and think: Is it a blood cancer, like leukemia?
But chronic ITP isn’t cancer, and you shouldn’t panic. You may have low platelets. But this isn’t because there’s a problem with how your bone marrow makes blood cells (as is the case with blood cancers).
The “immune” part of chronic immune thrombocytopenia provides clues about why it happens. Typically, your immune system protects you by destroying germs. It makes antibodies that fight threats. But with chronic ITP, your immune system mistakes your platelets for one of the “bad guys.” It attacks, leaving you with a low platelet count.
Healthcare providers don’t know what triggers the attacks. But they do know that it’s not because of something you inherit. Related, it’s not something you pass along to your biological children.
Your physician will monitor your platelets to keep you safe during pregnancy.
Often, the uncertainty of a chronic ITP diagnosis comes down to the question, “What does my diagnosis mean for me?” This is a challenging question to answer because everyone’s experience is different.
Some adults living with chronic ITP need ongoing treatment to boost their platelets or keep their immune system from attacking them. There’s no cure, but your provider will work with you to manage your condition. The kinds of treatments you’ll need and how often you’ll need them depend on your diagnosis.
Having chronic ITP can change your life. But that doesn’t mean it has to keep you from living a fulfilling one. Depending on how low your platelets are, you may need to take medications to prevent serious bleeding. You may need to avoid medications or supplements that increase your bleeding risk.
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You may also need to take precautions to prevent injury. For example, wearing seatbelts and helmets is a must. Steering clear of activities, like contact sports, that put you at risk of a head injury, is also important.
But “playing it safe” is different from not playing at all. Most people living with chronic ITP are able to do the things they enjoy with their provider’s guidance.
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