When I was first diagnosed with PV 25 years ago, I had no one to talk with about my disease. There was no internet and I felt alone – that I was the only person in the world with PV. I was on my own looking for answers. Some of the questions I didn’t ask, and my doctor didn’t really know, were about immunosuppressive drugs.
Back then, they were just beginning to use Imuran, but my doctors didn’t know or weren’t sure how to use it, so I remained on 30mg of prednisone for 3 ans. The side effects of steroids were not discussed. I had to encourage my internist to give me a bone density baseline test, check my sugar, and ask for a referral to see the ophthalmologist. So, when I started the IPPF 15 years ago, it was important that all the best information was available.
To insure the right questions are asked, the IPPF now offers patients a Programme de gestion de la santé. This is a free, confidential program designed to help you understand your drugs, give information about side effects and possible preventive measures, along with needed emotional support. We provide you with a unique opportunity for one-on-one peer health coaching, not offered by most non-profit disease foundations.
Health Coaching is one aspect of HMP; another is what YOU can do to help us and others with your disease. This part of the program is comprised of questions on different facets of disease such as what drugs you are on, and in what doses. We ask whether you understand your disease, how the disease has burdened you emotionally, physically, and financially, and when you had blood test, glucose tests, your eyes checked, or been to the dentist. When we have hundreds, even thousands of answers to these questions, we compile the data and get a good picture of disease process. Depending on where you are with your disease will depend on how often you will be asked questions. If you are on a lot of medication, you will be asked more often. If you are in remission, you might only be asked yearly. We have nearly 100 people signed on, and we thank them for giving their time for the good of the community.
I know it isn’t easy to spend time on the phone answering questions about your disease – especially if you are doing well and don’t want to think about it. But we are a rare disease. Having a patient registry provides information that is rarely gathered. Who is on CellCept and what is the average time it takes for the steroids to be reduced, and how long does it take for a person to get off of steroids You can ask the same questions of Imuran, Rituxan, and IVIG. Has having this disease interfered with or affected your social life or your family life Has the drugs caused you fatigue Can you access and talk with your doctor
Imagine how important these questions are to those who have yet to be diagnosed. As rare as we are, there are thousands of us out there. The best way to get answers to these questions is if we work together. We cannot depend solely on doctors and researchers. It takes many years for double-blind drug studies to not only show results, but even begin. Patient information can be powerful. We need to depend on each other. Go to or call us and we will send you more information. Someone will call to explain the process and set up the first session. It is more likely that answers will come sooner rather than later if we all participate.