The First Remarkable FOP Forum in Taiwan

A Transnational Friendship Built on FOP, the First Remarkable FOP Forum in Taiwan

Fibrodysplasia Qssificans Progressiva, FOP, is a very rare inherited disease with about 1 in 2 million prevalence rate. In Taiwan, out of its 23 million population, there are only 5 reported FOP patients at present. It shows how RARE this disease is.

In order to stimulate related medical intercourses and offer more opportunities for the patients’ family to share their experiences of attending nursing, we invited the most authoritative FOP researcher in the world, Dr. Frederick S. Kaplan from The University of Pennsylvania School of Medicine, the author of the fascinating book “Finding the Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP”, Dr. Carol Zapata-Whelan, and her son with FOP disease, Vincent Whelan, to visit Taiwan.

On May 19, together with Genetic Center of National Chung Kung University Hospital, we held a FOP forum in Tainan. The respectable director of Genetic Center, Dr. Shio-Jean Lin, hosted the forum and introduced the guests to the audience. During the lecture, Dr. Kaplan reported his latest research on FOP. He said the point mutation had been found at present, and the coming step is to find out the cure. He also emphasized the importance of equipping accurate knowledge on FOP and its attending nursing. FOP patients should be highly alert on protecting themselves from getting injured. Any little muscle wounded could cause serious deterioration. Even a normal medical deed such as a muscle biopsy, operation, muscle injection, or tooth extracting…etc. could be dangerous for a FOP patient.

Three special guests also attended the forum; The main actors and actress of the FOP film “Wudang Shao Nian” joined us to give their encouragement. “Wudang Shao Nian” is a story of a young boy who had been dreaming of learning Kungfu (martial arts) in Wudang Mountain. While he did go there with his mother, he found himself not possible to learn Kungfu for he had FOP. This film is going to be released in Taiwan and China this year (2008). Dr. Kaplan was very cheerful for the coming of this movie. He said this film might raise great awareness on FOP in China and that will help a lot of FOP patients in the future.

After Dr. Kaplan’s lecture, enthusiastic, warm-hearted Dr. Carol Zapata-Whelan shared several life stories of FOP families. These stories come from different countries, and all of them are very touching and inspiring. The audiences were all moved by their bravery and perseverance, especially the story of her son, Vincent. Despite his suffering of the hardship caused by FOP, he’d never given in. With the support and love of his family, he made up his mind to be a doctor to serve other FOP patients in the future. This summer, he received the acceptance from the University of California Medical School and will fulfill his dream of being a doctor.

After the forum, another remarkable event was the meeting of the 5 FOP families. For the past years, the FOP families in Taiwan fought with the disease alone by themselves. This first gathering was a good chance for them to share with each other their living with FOP and the experiences of attending nursing. Dr. Kaplan and Dr. Shio-Jean Lin also helped examine the patients together.

The 2nd day, Dr. Kaplan gave a lecture on FOP, attended a teaching clinic at the Veteran General Hospital, Taipei.Then we invited the chief editor of Living Psychology Publishers to host an interview with Dr. Kaplan and three rare disorders families, the Whelan’s form USA, the Wu’s from Taipei and The Wu’s from Hualian, Through this interview, we hope to share with the public the courageous life stories of these incredible people, how they face a severe disease in their life with positive attitude and optimistic mind. We encourage the rare disorders patients walk into the sunlight to share out their difficulty and get proper support, rather than hiding themselves at a gloomy corner with sorrow.

After getting back to the USA, Dr. Kaplan immediately talked to the executive director of IFOPA (http://www.ifopa.org), Ms. Linda Daugherty, about constructing an online information desk of FOP in Mandarin. In thinking of the impact the FOP movie might cause in Mainland China, to call out thousands of latent patients who are now haven’t received proper diagnosis, Dr. Kaplan felt so cheerful. We honored Dr. Kaplan so much, as well as IFOPA, Dr. Carol Zapata-Whelan, her brave FOP son Vincent and their family, and all the courageous FOP families who have did their best to unite a supporting base for FOP patients all over the world.