Syringomyelia; a cyst or cavity on the spinal cord.
Sounds scary doesn’t it? Knowing that such a vital part of your nervous system is damaged; and just like the thousands of other illnesses/disorders it can claim lives. It can change lives in ways people can’t imagine, causes unbearable pain and puts a strain on all relationships.
My dad was diagnosed with chairi malformation (type 1) in June 2013. After being sent for multiple scans in the previous April. Me and my brother being considerably younger they waited until it was diagnosed to tell us, leaving them and the few that knew under extreme amounts of stress and pressure to pretend everything was fine.
On October 24th 2013, 3 days after my 13th birthday, my dad went in for surgery. He was having a vital surgery to stop the deterioration of his muscle in his arms (and legs). This is where the syringomyelia came in. It was side effect, a chance he had to take when agreeing to have the surgery. That he would be left with that problem his whole life.
The symptoms that can come along with syringomylia have left both him and others with life long problems, such as;
- muscle weakness and wasting
- lack/ complete loss of reflexes
- inability to feel sensations, including heat and pain
- muscle spasms
- back/shoulder/arm pain and/or stiffness
- along with other symptoms
It may be just another illness to most, but to those living with the physical and emotional pain its a full time occupation.
Syringomyelia is more than a physical burden, it takes a toll on your mental health. Leaving many sufferers with depression, adding to the list of worries they carry day to day. Each case differing to the other its hard to find a solution, or find a way to relieve the pain.
My dad, for example, works as a plumber and gas engineer which requires heavy lifting but he can’t put that strain on his arms or shoulders. Leaving him incapable to fully do the job he’s enjoyed for years, needing a helping hand. However, he is one of the lucky ones he can still walk, syringomyelia can leave people paralyzed.
So, what can you do to help?
Take part in charity events (for example);
- UK – Ann Conroy Trust.
- US – ASAP
Learn more about it – WSTF
Spread the word. Let people know; just like every other disease this needs awareness. For people who suffer like my dad, and for those who have it worse. Let’s try to help them. Let’s fight for visibility for this invisible illness.
