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| 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 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.
http://www.gopetition.com/petition/42198.html
http://www.gopetition.com/petition/42198.html
Hi Sonja
ReplyDeleteWe are friends of Marianne and we are so glad to have read your blog. You are a huge inspiration to us and we salute you! You have shown us that no matter what happens to our bodies, with a strong and amazing mind we can go forward. You will remain in our thoughts and prayers.
Cheryll and Nicci Marais
Thank you Cheryll and Nicci for reading my blog. Your encouraging words and especially your prayers are much appreciated. Sonja
Delete