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.
“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.”