In April 2007 I was diagnosed with brain aneurysms and a rare vascular disease called Fibromuscular Dysplasia (FMD). What started as exercise intolerance and a swishing in my ear turned into something much more serious. I had symptoms for many years, but nobody had really put it together until I had a thorough coordinated evaluation at Mayo Clinic. Through this journey I learned that vascular disease in women is under diagnosed. I also learned that there is not much patient support or advocacy.
Being told that you have rare disease is devastating. Instinct or "fight or flight" took over and I decided to fight. Like many empowered patients I went to the web and found both reliable and not-so-reliable sources. I also noticed that patients like myself expressed two main concerns when it came to their health care. First, their doctors did not take their symptoms seriously. Second is that many are frequently given misinformation regarding their disease.
I wanted to find a way to support those afflicted with FMD and other non- inflammatory vascular diseases. In 2010 I co-founded a support group called Midwest Women’s Vascular Advocates. Our mission is to support and educate women with non-inflammatory vascular disease. We have a web page and a Facebook site as a way to connect with others. Locally we hold support group meetings twice a year and have drawn patients from out of state.
My experience using social media has included Twitter, Facebook, Linked In, YouTube, and blogs amongst other online community support. I use Twitter (@FMDGirl) to help educate the public about vascular disease. This has been a great media to interact with other health care professionals and patients. I have held one twitter chat #FMDChat that I hope to see grow over the next few years. Through social media contacts, I was also interviewed for over an hour on a medical internet radio station with call in guests. With new information coming out through research and increased awareness social media is going to play an important role in getting accurate information out to the public.
|@FMDGirl and @westr|
With the use of social media I have found many others like me all over world. I was fortunate to meet a young girl from South Africa with a rare form of FMD through Facebook. Facebook became an important tool in getting her the proper medical care that she needed. Through this contact I was able to facilitate consultation and treatment at a US medical facility and help fundraise on her behalf.
Rare disease needs more attention, and being able to participate in Mayo Clinic’s Social Media Summit will give me the opportunity to explore more diverse communication tools. Participation will help me facilitate change locally and globally. I hope to learn how to become a better blogger and how use video technology as a medium of communication. The world of health care in social media is exploding in many directions and it is my hope that the summit will give me a clearer picture of what social media can do to help me reach my goals.
Knowledge can empower patients and caregivers. There is more work to be done, the health care community has come a long way since my diagnosis but it is not enough. Being proactive through social media is the answer to making rare diseases not so rare. I would like to contribute to the conference through my experiences both as a patient and an advocate. I can give insight to the thoughts and fears patients face when dealing with a rare disease. I can bring attention to what is needed in social media health care.
My goal is to see the medical community embrace social media as a way to make important changes in health care and the way we look at rare disease. We can learn a lot from each other by making a connection. Social Media allows patients to become real, with real concerns and fears. We are a new voice that demands information and we want be active team members in our care. I would be honored to be one of the many voices that change the way the world participates in health care.