James Bussel, MD, shares insights on navigating immune thrombocytopenia (ITP), from the challenges of differing expert opinions to the importance of patients taking ownership of their care. He reflects on advocacy, education, and the strength found in connecting with the Platelet Disorders Support Association (PDSA) for resources and community.
Transcript
It’s important to realize that with an increasing amount of data coming out in ITP — different laboratory studies, different clinical trials, different results — even the experts, the people such as myself who spend a lot of time on ITP will not always agree on the right way to approach something.
That means not only what testing is needed, but also what the right treatment is or the best treatment is in a given patient.
You can only imagine if you — as a patient — are seeing a hematologist or an internist who is not particularly specialized in ITP how hard it will be for them to stay on top of all these nuances and subtleties.
Perhaps the best solution for that is to obtain your own set of information and become an expert in your own disease.
One way to do that — and I’m biased because I’ve been involved with the Platelet Disorders Support Association since even before it was formed — is to go to their website, PDSA (Platelet Disorders Support Association), and look at the material that they have on their site.
In addition, you can contact them with questions, and if they can’t answer them simply, they will refer them to one of the people like me who are medical advisers and try to get you answers back that way.
It’s important that you take ownership of your ITP, find out at least something about it, and perhaps be involved with PDSA. They also have support groups, a yearly meeting for patients, a number of booklets, etc.