February 28th, 2013Life
Today is Rare Disease Day. I saved the date months ago and thought I absolutely needed to write a post on that day. A relative of mine suffers from one of these diseases. A blogpost is not much. Just a little message in a bottle thrown into the sea hoping it’ll change things. A little. At my level. My way.
This person who I care so much for suffers from a disease with a rather ugly name: Multiple System Atrophy (MSA). A warning before I start explaining what it is: I am not a doctor hence what I will say about the disease might not be totally accurate. The fact that there is so little information about this disease does not help describing it correctly either. Causes are unknown and so is the cure.
How does one find out about this disease? First doctors diagnose Parkison’s disease since MSA symptoms are quite similar at first sight. Patients can have a number of symptoms but usually not all of them at the same time. This person I care so much for does not have tremor, one of the well known symptoms of Parkinson’s disease. It all started by a frog in the throat, a tendency to write really small characters, and balance problems… after seeing several doctors, the diagnosis was made: PARKINSON. Two years later, since the medicine that usually helps control the symptoms of Parkinson’s disease did not work, the diagnosis was revised. It was MSA.
MSA is a neuro-degenerative disease (another ugly name). It damages certain parts of the brain, which progressively deteriorates the ability to move and to speak, amongst other symptoms. Within 5 years of the diagnosis, half of the patients need to use a wheelchair.
But it is a rare disease. This means there is little information available and not much research is done on it. When facing this disease, you feel powerless. You want to help out but you don’t know how. You discover all the flaws of the system. And you don’t know which one should be tackled first. What can I do? A blogpost? A couple of tweets? How frustrating.
I found out that the UK Multiple System Atrophy Trust is quite active. March will be MSA Awareness Month. You can support the movement by adding a little logo to your Facebook and Twitter profile pictures. It’s simple; take a look. Are you going to help me then? I know that since it is a rare disease you are probably not concerned by it so why would you add a badge on your profile pictures? I understand. Today I’ve already thrown a few messages in a bottle into the sea by posting messages on Facebook and Twitter. Nobody relayed the message. You might not be directly affected by the disease but you have read this post until the end. Just a couple more clicks and you’ll get my ever-lasting gratitude. This way please. Thanks.Tags: MSA, Multiple System Atrophy, Rare Disease Day