Highlights From the PDSA 2017 Conference in Honor of ITP Awareness Month

It’s National Immune thrombocytopenic purpura (ITP) Awareness Month!
In honor of ITP awareness month, here are some ITP facts from the 2017 PDSA Conference in July:

The conference kicked off with a presentation entitled ITP 101 by Dr. Bussel. He explained that the path of pathophysiology can be rather complicated and that there are different types of ITP, classified by the length of time you suffer from it. If you are newly diagnosed (within 3 months of being diagnosed), you would most likely be started on steroids, IVIG or even just observed, particularly if the patient is pediatric. Persistent ITP is when the condition continues into the 3-12 month frame.

Chronic ITP is classified as ITP that has lasted for more than 12 months.

Just establishing a diagnosis of ITP, like many other rare disorders, can be difficult to start with. Essentially, the criteria for diagnosis is having a platelet count less than 100k and no other abnormalities. You are an otherwise normal, healthy adult with no other cause for thrombocytopenia.

Some symptoms of ITP include frequent bruising, small red dots on the skin known as petechiae, heavy periods, blisters inside the mouth, and fatigue. The worst case scenario symptom, and thankfully a rare one, is bleeding in the brain.

In a presentation by Dr. Bussel, Dr. Gernsheimer, Dr. Kessler. Dr. Kuter, Dr. Lambert, Dr. Liebman, Dr. Semple and Dr. Tarantino we learned that one third of people with ITP go into remission the first year. Others actually have the ITP eventually go away on it’s own. For the rest of patients, however, finding a treatment that works for them can be a journey.

The doctors’ advice for patients’ interactions with their physicians was:

Ask questions! It’s probably a good idea to write a list of questions you want to ask before the appointment so that you make sure you don’t forget anything. Don’t say you’re “ok” if you aren’t, patients are often a little too good at putting on a brave face, when your symptoms need to be addressed. It may help to bring a family member to the appointment with you, not only for support, but to provide their observations.

For the parents of younger patients, it’s a good idea to encourage your children to ask the doctor some questions themselves. This way they begin to get used to advocating for themselves and can feel more in control over their health. It might even be a good idea to leave the room at some point so your child can have some one on one time to ask anything they’d like. Of course, doctors’ schedules are often tight so it’s good to clear and concise with your concerns if you can. You can also utilize nurses and PAs who can be wonderful resources.

Anyone who is living with ITP can tell you that, between the symptoms and uncertainty of ITP itself and the same for the treatments, it’s no picnic. The good news is that there is always hope on the horizon…. better treatments are likely to be developed as the condition is better understood through more research. Despite its challenges, ITP should not stop you from living your life. Just exercise caution. Monitoring your symptoms, avoiding high impact activities like football, and wearing medical alert jewelry can help you keep ITP from interfering in your life anymore that it needs to.

As with any illness, self education and advocacy is important! The PDSA is a wonderful site and many people find in person support groups helpful as well as online connections. No one understands what you’re going through quite like someone who’s going through the same thing. Maybe we’ll see you at PDSA’s 2018 conference?

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