For a long time I just used the website for information, I didn’t use the forums system and the opportunity for sharing information with other people in the same situation.
After a long period of downtime in my treatment of my PV, I decided to do something about it myself – I didn’t want to sit back and wait for something to happen any longer. I posted 2 or 3 short messages on the forums, and within a week I got contacted by Sharon Hickey who is a Peer Health Coach in the IPPF – and ever since she has taken me under her wings.
The 2011 IPPF Annual Meeting
It is a long way from Denmark to Detroit, and that definitely made me and my family think twice about attending the meeting! After some thinking, and the fact that no new attempts to treating my PV were going to happen – we decided to travel the distance and collect information.
My mother and me left Denmark not knowing what to expect from this trip – and not knowing what to get out of the Annual Meeting.
Friday evening was the first time we met with IPPF, the people in the organization and other patients. We were greeted with such warmth and kindness that it blew us a little away. The welcome reception lasted for 3 hours, and what a 3 hours! In that time I got to talk with people who have PV themselves, which is an experience that means much to me. For the first time of the 5 years I have been diagnosed with PV, I felt that someone really understood me. I didn’t have to explain how it hurts in my mouth, I didn’t have to explain all the emotions that come with being diagnosed with such a rare disease – I felt a connection with these people right away.
Friday evening was very overwhelming for me. I got to tell my story to people who really seemed to care, and knew what I was talking about. When the evening was over I had made contact with other patients and doctors.
One of the doctors I met at the annual meeting was Dr. David Sirois from New York. I told him my story, and that I had never been in remission for five years – still on prednisone, and he was so kind to take me in for a consultation the following week, when I came to New York.
The consultation was very giving because Dr. David Sirois really cared and was willing to get in touch with my doctor in Denmark. He also gave me some tips to use in my daily routine of keeping my mouth and gums clean. Finally he made a treatment plan, that I am following now – and so far it is going very well.
After this trip I almost feel like a new person. The whole experience of the annual meeting has been so informative, and I have learned that you don’t have to put your life on hold even though you have a rare disease. It is possible to get better, you just need to get the right information, and that is something the IPPF and an annual meeting can give you. It was my first meeting, and I can only recommend other patients to go – it will change your life.
I would like to thank all those who attended in the meeting in Detroit, for making my trip so positive and giving. A special thanks to Dr. David Sirois for taking your time to see me and to Sharon Hickey my dear Peer Health Coach.
“I couldn’t have done it with out you”.
Signe Horn Thomsen