I am thrilled to find out that there is a day dedicated to raise awareness for rare diseases and February 29, 2012 marks the fifth international Rare Disease Day.
Moyamoya Disease is a rare disease and I experienced firsthand the challenges associated by being diagnosed with it.
Firstly because it is rare not many General Practitioners are aware of it and consequently they will not be able to make the right referral. The many times that I was admitted at the Emergency Department, most of the attending doctors were not aware of it. I was touched when one doctor was curious enough and willing to learn from me simply by showing interest and asking questions.
Support is of great importance during treatment for any illness. While family members and friends are crucial, they may not always be the best support. Fellow sufferers usually serve as better support because they too have gone through similar experiences. However, when the disease is rare the pool becomes that much smaller and often you don't even know where to find them.
Therefore, I am really thankful to DJ, who started Moyamoya.com as an online support. This was a lifesaver because there are tonnes of useful information and there is also a message board where people can ask questions and form support group if they happened to live in the same area.
That's how I found another Moyamoya sufferer and we met up a couple of times to share our experiences. It was very reassuring to be able to talk to someone who have been through what I had and being understood was such a gift. Given my background in working with people who are recovering from substance abuse and addiction, I recognise the tremendous power of group support and I too have experienced it for myself.
One of my aims in launching Winifred & You is to reach out and provide support to other Moyamoya sufferers and their loved ones. I want to tell my story not just to offer my experience and hope but also to raise awareness for the disease.
Without awareness, patients with rare diseases and their loved ones continue to suffer in silence and scientific progress is hindered. With awareness, we plant the seed of hope. Indeed, we can be “Rare but strong together”.
Please watch the video and share it with your family, friends and colleagues to support this worthy and commendable effort. Here's how you can get involved. Thank you for your support.