I am a patient who has ITP and attended the PDSA conference this year in Cleveland, Ohio. I learned so many new things from other attendees and from the outstanding doctors who attend the conference every year and I would love to share them with you.

What is Immune Thrombocytopenia Purpura (ITP)?

A quick background: ITP or immune thrombocytopenia purpura is a blood disorder in which your own body destroys or does not make enough platelets. Platelets are a part of our blood that help us clot to heal injuries. So for those of us with ITP, this means we have trouble with bruising and bleeding quite often. ITP is an autoimmune disorder and unfortunately doctors cannot figure out why this happens to us. An autoimmune disorder means that your body’s own immune system attacks healthy cells in you.  

The Conference

At the conference I learned the requirements for autoimmune disorders: genes, environment, and immune regulation. According to the doctor who was presenting, all three of these parts must be happening for a disorder to be autoimmune. Fun fact: only 7% of the population has an autoimmune disease!

All attendees were assigned small groups to have meetings and discussions with. This was one of my favorite parts of the conference because you get to hear people’s personal stories and interact with doctors on a more personal level. During these small groups is when I learned the most helpful information. I have had ITP for 12 years now and have never heard of the drug Amicar, but this year I learned all about it and why it is so useful to have.

One of my favorite doctors at the conference was in charge of my first small group and she informed us about Amicar. Amicar is a medication that controls bleeding and promotes clotting. It was suggested that we always have a prescription of this to carry around in case of any bleeding emergencies. A very common symptom of ITP is nose bleeds and I learned from a fellow patient at the conference that Amicar can stop them almost immediately. The trick is to crush up the pills with water to make a paste, dip a tissue in the paste and then hold it in your nose and the bleed should stop shortly after.  I would have loved to have known about this when I had a nine hour nose bleed! I also got to talk with a few other patients in my small group who have very similar stories and symptoms as I do. The unique thing about ITP that was a recurring theme of this conference is that everybody’s experience with ITP is completely different. Getting to talk with people who are similar to me was very comforting.

After this meeting I even got a referral to a specialist that I believe will help me in my ITP journey and treatment path. I was excited to learn about a new treatment that came out for ITP and is in pill form. At the conference, however, they did not seem to talk about it, which makes me skeptical to try it. There are only but so many options for treatment of ITP, many of them involving needles, IVs or even surgery!

Clinical trials are something that was recommended this year at the conference since there are quite a few being run right now. I specifically got to talk with a company that had their table set up at the conference and informed me about their clinical trial and how it could help me.

The conference is always so interesting and helpful to go to every year.  Since ITP is considered a rare disorder, it is really nice to get to talk and meet other people with the same disorder. Knowing that you are not alone in your journey and that other people can finally relate to you and how you feel is comforting. Hearing and talking with the excellent doctors and specialist who attend the conference makes it all worth it too. If you are considering going or interested at all I would definitely recommend, whether it is to gain more information as a patient or as an employee of a company associated with ITP.  

What are your thoughts on living with ITP? Share your stories, thoughts, and hopes with the Patient Worthy community!