|Taken at the start of our walk for 'A mile and a candle for MSA' on 3 October 2011|
On 6 September 2010, I was diagnosed with MSA – Multiple System Atrophy - a neurological, degenerative disease most people have never heard of.
MSA is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance, coordination, and other autonomic functions of the body such as bladder control, bowel issues, fainting and dizziness due to severely low blood pressure, speech and swallowing difficulties, sleep disturbances, breathing problems, and rigidity and tremors similar to Parkinson’s disease or ALS. The cause of MSA is unknown and there is no cure.
In the aftermath of this diagnosis I searched for support groups and other patients with this disease. On Facebook I have been fortunate to meet some extraordinary, brave and compassionate people who infect me with their enthusiasm and inspire me with their courage. Some of them have lost their loved one’s to this disease, but continue to dedicate their lives to creating awareness for MSA. Some are my age, and some are younger. One such person is a guy with a stunning smile and an equally stunning personality, who, when his struggle with the disease allows it, dedicates his days to supporting other patients and their families. Another person is a beautiful younger woman who was a marathon athlete, and now bravely battles this disease, that everyday robs her of more of her abilities. Some of them write beautiful poetry, others used to lecture at universities. None of them have the ability to pursue their former careers, former hobbies, or care for their families and contribute to the economy. Some still have teenagers with braces, and others have died since I’ve met them. And so my list of MSA patients, who have no idea why or how they got this disease, grows ever longer.
All of us are dreaming of a cure and the day that we’ll be able to bring you the good news that we are better. Therefore we are humbly asking you to show us you CARE and give us HOPE by helping us create awareness for the thousands of people out there who are suffering the consequences of this dreadful disease.
There is no
sport celebrity linked to MSA and it is left up to the patients, their families
and friends to create awareness for this disease. Hollywood
I have little chance to achieve anything by myself, but with the united help of my friends, and your friends, and their friends…..who knows what we can achieve!
Let’s start by taking just one small step towards a big goal:
Please send this message in every possible way to everyone you know.
Sonja van Rhyn
“One person can make a difference, and everyone should try”. By John F Kennedy
By signing this petition below, you too will become part of creating awareness and ultimately, a cure for MSA.