My life is very different to most 22 year olds. Saying that, my life is also very much the same as people my age. This is a short glimpse into my life living and dealing with Friedreich's Ataxia.
Friedreich's ataxia is a genetic condition that causes progressive damage to the nervous system. Symptoms include; increasing trouble with balance and coordination, slurred speech, swallowing difficulties, vision and hearing loss. In most cases, the patient will more than likely develop heart disease, scoliosis, foot deformities and diabetes. Fatigue is also an extremely common symptom. Patients eventually will require the use of a wheelchair about 5-10 years after diagnosis. There are at least 10,000 adults and around 500 children in the UK with a progressive ataxia. There are 30+ different types of Ataxia, which all have different symptoms, although all Ataxias have the initial symptom of "the loss of full control of bodily movements."
If you wish to find out more please follow the website, AtaxiaUK, to find out more information.
I was diagnosed at the age of 15. Naively, I thought I'd be diagnosed with something that could be fixed by an operation or something. How wrong I was. Friedreich's Ataxia is incureable and untreatable. However, some symptoms can be treated individually. Like scoliosis for example, that can be treated by two metal rods being inserted along the side of the spine to make it straight and no longer curved. Or some patients feet turn inward, this can be treated with an operation, cutting and shortening the achilles tendon so that the foot can appear straight again.
I had previously been diagnosed with scoliosis at the age of 13 and my doctors at that time were saying that my balance and walking was off due to the curvature in my spine. I wore a back brace for roughly 6 months, in hope that the brace would stop it continuing to get worse. At the age of 14, about a year on, one of my doctors seemed worried about my walking, he said that scoliosis would never cause walking like that. That's when it all began, never ending physical tests, blood tests, MRI scans etc.
About a month after my 15th birthday I recieved a hospital appointment to see a Neurologist. He and a nurse gave me a diagnosis I was never, ever expecting. That day would change my life forever and I didn't even know it. I can't tell you much about the diagnosis itself as it's all a blur to me. I just remember the words "You will be wheelchair bound in the future" Fuck! Little did I know that being in a wheelchair would be the least of my worries.