You may have unanswered questions about what to expect going forward, especially because the severity of ITP covers a wide range. What activities can I participate in? What drugs or other treatments will I need? And what exactly is going on inside my body? While there are no easy answers to these questions, here are the most important things to know about life with ITP.
1. There’s probably nothing you did to cause ITP.
ITP happens when your immune system mistakenly attacks your platelets, which are cells in your blood that help it clot when you are injured. While there’s still a lot to learn about what causes this immune attack, there aren’t any known behaviors that contribute to it. “Normally your immune system recognizes everything about you as belonging, and everything outside of you as foreign,” explains Terry B. Gernsheimer, MD, a hematologist and professor of medicine and hematology at University of Washington Medicine in Seattle. “What happens in ITP is that distinction somehow gets clouded.” Dr. Gernsheimer notes that having a personal or family history of autoimmune diseases may increase your risk of developing ITP, even if no one else in your family has it. And for reasons that aren’t clear, younger women are at higher risk for developing ITP than other groups. “Certainly if your platelet count is low, we might expect bruising from minor trauma or no explanation,” says Gernsheimer. You may develop petechiae — tiny reddish or purple spots on the skin caused by bleeding — especially in weight-bearing areas of your body. “So typically it’s around the ankles or legs, because that’s where we’re putting the most pressure,” she notes. With a moderately low platelet count, it may also take longer for cuts to stop bleeding, and you may develop bruising when you have blood drawn from your arm. If your platelet count falls particularly low, “We sometimes see blood blisters in the mouth or nosebleeds,” says Gernsheimer. “It doesn’t need to be that low for bleeding gums, especially if your dental health is not great.”
3. Menstrual periods can be heavy for women with ITP.
Younger women are disproportionately affected by ITP, and heavier menstrual periods are one of the most common and noticeable symptoms — if you know what to look for. “Women have a tendency to think whatever they’ve had all along is normal, because they generally don’t quantitate it with one another,” says Gernsheimer. “I see many people who think that a lot of bleeding is normal or a little bit of bleeding is abnormal.” Instead of simply telling your doctor you’ve been having a normal or heavy menstrual period, try to explain it in objective terms, such as the number of feminine hygiene products you’re using on your heaviest days, Gernsheimer suggests.
4. People with ITP often experience fatigue.
Many people who have ITP experience fatigue that corresponds to disease activity, according to Gernsheimer. Why this happens, though, isn’t clear. “As people who are driven by scientific evidence, we really don’t have a great explanation for it,” Gernsheimer notes. But based on her experience and conversations with colleagues, she says, the connection is undeniable. “Don’t allow your physician to tell you that the fatigue has nothing to do with ITP,” she urges.
5. Treatment can lead to remission — and does in most people.
A major goal of treating ITP “is to get to a point where you don’t have to continue ongoing drug treatment,” explains Claudia Tellez, MD, a hematologist and oncologist at Northwestern Medicine in Chicago. In clinical terms, this is known as remission. Dr. Tellez estimates that in her practice, about 80 percent of people who have ITP achieve remission. This doesn’t necessarily mean your platelet counts will be normal, but it does mean that you wouldn’t require either ongoing drug treatment or special measures — beyond normal precautions — to avoid or treat bleeding or bruising.
6. It’s possible, and important, for nearly everyone with ITP to stay physically active.
An active, healthy lifestyle is good for people who have pretty much any health condition, and that includes ITP. “If you have a low platelet count, I don’t think it’s the best thing to go out and play tackle football,” says Gernsheimer. “At the same time, even if your platelet count is very low, there’s no need to put yourself in a jewel box. It’s always okay to go for a walk,” she explains, unless you’re at high risk for falling due to another condition. When your platelet count is low, Gernsheimer emphasizes, you don’t want to strain during exercise, such as by lifting heavy weights. But for most people, “When you start getting counts above 50,000 or 75,000, pretty much any exercise is going to be okay.”
7. Complementary therapies may help, but proceed with caution.
A leading source of information and support for people who have chronic ITP is the Platelet Disorder Support Association (PDSA). Gernsheimer serves on the medical advisory board, and the group, she notes, is open minded but realistic when it comes to sharing information about dietary supplements and other complementary therapies. The PDSA has a web page on vitamins and other supplements that may be useful for treating ITP, which includes an overview of the evidence supporting their use and precautions to observe when taking them. “I would be extremely careful about taking any dietary supplements without talking to your doctor,” though, says Gernsheimer, because certain components could possibly interfere with clotting. Fish oil and garlic, for example, are both known to have anti-clotting effects.
8. You’re not alone, and support groups can help.
Along with supplying information, PDSA also offers an online discussion group and local support groups. They provide a way to share your experiences and learn from others, as well as a place to give and receive emotional support. “A lot of my patients go to these support groups,” says Gernsheimer. “Or they at least go to the PDSA website to get emotional support, because they can see that there are people out there who are doing well.” Tellez cautions that in online discussions, “It’s the minority of people who have ongoing low platelet counts that are seeking out other people with similar experiences,” so discussions may not reflect the reality of most people who have ITP. Gernsheimer agrees. In many cases, “People on chat groups are going to be the ones for whom something didn’t work,” she says. When seeking online support or information, “Remember that your journey is your journey. Don’t be brought down by someone else’s bad experiences.”
