On Friday March 4, 2011 I was greeted by my sister, Stacy, at the Vancouver airport. This was the last stop on the Answering TTP Roadshow west. Not only was I able to meet with medical staff at Vancouver General Hospital, VGH, but we were also able to arrange a support group session with local patients and supporters.
|Dr. Yenson, Me, Dr. Streenivasan, & Dr. Zypchen|
Unfortunately my first impression on the Vancouver doctors on Friday did not go as smoothly as I had hoped. Despite leaving over 30 mins to make the 10 minute drive to the hospital we made a wrong turn and arrived 15 minutes late. Dr. Yenson, Dr. Streenivasan, and Dr. Zypchen were all very kind and understanding. Moreover, they are supportive of our efforts and have agreed with the value of handing out the new TTP patient brochures at their hospital. In 2010 their centre treated 11 new TTP patients and 3 relapsed TTP patients with 136 Apheresis treatment procedures. Over the past 20 years, the center has treated 168 TTP patients.
After the meeting with the doctors, I was fortunate to meet up with another TTP patient and his wife to share our experiences over tea. Bill and Marjorie are kind people who have volunteered with the Southern Okanagan Association for Integrated Community Living for many years. Last year they were enjoying a cruise of the Panama Canal when Bill was struck ill with what the ship’s doctor thought was only a virus. Bill’s altered mental status tipped Marjorie off to his need for medical attention. Bill does not recall time between leaving the ship and starting treatment for TTP at VGH. Both Bill and Marjorie feel very fortunate that a doctor, trained at VGH, recognized the signs of TTP near their small hometown over 5 hours from Vancouver. Bill's full story will soon be available on the Answering TTP website.
|Vancouver TTP Support Group Participants|
The next morning I felt well rested and excited for the patient support group session. We arrived more than 15 minutes early to meet Dr. Yenson to prepare the meeting space and set out the snacks and coffee. The meeting was a success. There were 6 patients, 4 supporters, Dr. Yenson and Dr. Benny in attendance. Dr. Yenson gave an overview of TTP, participants asked questions and shared their experiences with TTP, and I discussed my experience and the founding of the Answering TTP Foundation.
A reoccurring question that surfaced again today during discussion was that of relapse. ‘Will TTP patients be able to recognize the symptoms of a TTP relapse?’ Unfortunately the answer to this question isn’t black and white. Most participants took part in this discussion topic. It seems that talking about it together helps. I was relieved to hear that I’m not the only one who looks in a full length mirror on a regular basis to check for bruising. Bruising was one of the first signs I should have noticed during my first TTP episode. Moreover, it helps to know that some patients seem to display a similar pattern of symptoms upon relapse. Recognizing this pattern of symptoms early and seeking medical attention quickly, can mitigate risk of irreversible damage from TTP.
During this support group session I recounted my experience battling TTP three times thus far and how this fight has outlined opportunities to improve the prognosis for all TTP patients. Answering TTP Foundation has been established to provide a national framework to connect all TTP stakeholders across Canada, and with the international community to leverage these opportunities together. Involvement can start as simply as joining the Answering TTP community and sharing your story. Patients are also encouraged to help start local support group and fundraising initiatives utilizing supportive resources from the Answering TTP Foundation. Together we can help improve the prognosis of TTP.
After the support group session I met up again with Bill and Marjorie, and another TTP patient, Iveta, for lunch. We remarked that TTP doesn’t care about your age, gender or background. It can happen to anyone at anytime.
I can honestly say that the Answering TTP Roadshow west has been even more successful than I had imagined. I am sincerely grateful to friends and family who have helped us to successfully connect with the TTP community in each of the visited provinces to jump-start local initiatives. Now it is time to plan the Roadshow east. Stay tuned!
Bill's full story is available now at www.AnsweringTTP.org -> Patient Stories
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