ONE YEAR LATER...

On 6 September one year ago, I was diagnosed with MSA – Multiple System Atrophy - a neurological, degenerative disease most people have never heard of. It’s been a year of immense battles on all fronts and in the words of a friend:  “I’m fighting a battle I can never, ever win".

When I read those words I realised that this disease is turning me into a loser and I DON’T LIKE BEING A LOSER!  No matter how hard I try, week after week this progressive disease is claiming more and more of my abilities.  I simply hate being the bearer of bad news and don’t know how to answer that question so often asked: “How are you”?  Or even worse: “Are you any better”?

I find myself totally unable to tell people that I’m not getting any better and, unless research comes up with a cure soon, it is unlikely that I ever will.  For more information on MSA read the following link and please sign the petition:

http://www.gopetition.com/petition/42198.html

Desperate to find a support group, or someone in the same situation to chat to and share practical tips on how to cope with some of the symptoms, I recently scanned the internet.  Unable to find anything in South Africa, I joined a site called www.patientslikeme.com.  Hoping to find some positive news, I read through the profiles of the patients with MSA, but found nothing that gave me any hope.

Then a thought crossed my mind - is there anyway I can bring a positive message of hope to these people?  I also realised that fighting this alone is getting me nowhere.  I need to get help and take the frontline of my battle to where it can really make a difference.

Coming up on the 3rd October is world MSA day.  Please click this link and read about this campaign to create awareness of MSA:

http://www.world-msa-day.org/World-MSA-Day/HOME.html

Also, search for the facebook group:  World MSA Day.

The campaign, A MILE AND A CANDLE FOR MSA, hopes to create awareness, educate people and find funds for research that may lead to a cure in the future.

I too, am dreaming of a cure and the day that I’ll be able to bring you the good news that I am better. Therefore I am putting my face and my name to this disease and I am humbly asking you to please join me in this venture to MAKE WINNERS of all those thousands of people out there who are suffering the consequences of this dreadful disease.

 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 by sending this message in every possible way to everyone you know.  Give us HOPE and show us YOU CARE, by burning a candle at 8 pm on the 3^rd of October (or walk a mile)!

“One person can make a difference, and everyone should try”.  By John F Kennedy

Sonja van Rhyn

PS:  It will be heart-warming to get some feedback on how many candles will be burning, and it would enable me to let YOU know what YOU have achieved!  Feel welcome to leave a comment, your name or even a photo (perhaps with that burning candle!), on my blog or facebook.

NS:  Aan almal wat gereeld my griffels lees: hierdie keer is die griffel in Engels omdat ek hoop om dit baie verder te versprei as slegs aan mense wat DIE TAAL magtig is! 

http://www.facebook.com/l.php?u=http%3A%2F%2Fyoutu.be%2FG6iYpkxYEZo&h=kAQDHUtx1AQAq-CxmAB4086wvVVRYAq4KYRA1urmRw-sQvw