This week’s blog has been written by our guest Alan Thomas from the patient group Atacsia a Fi – Ataxia and Me. In this post, Alan shares his journey to setting up his own patient support group in Wales for the rare disease Ataxia.
Ataxia – “What`s That?”
(the “What`s That?” question is always encountered by us “Rare disease`ers”. Indeed I was once asking that question, when I was diagnosed!)
‘Ataxia’ means ‘lack of order’. People with ataxia have problems with movement, balance, and speech. It is “degenerative” (in my case, it is a very slow degeneration) there is currently no cure for this “life-limiting”, neurological condition.
From an early age, I have always walked with a wobble and sounded a bit slurred, many people just thought “oh that’s just Alan!” Having achieved good qualifications at school, I went on to run my own electrical contracting business. But as the condition progressed, I retired due to health issues – the lack of co-ordination along with electrical circuitry “does NOT mix”! Upon returning from multiple GP and Neurologist appointments, I noticed that “Dr Google” can be uninformative, vague, and bewildering.
“Ataxia a serious rare condition that you have never heard of”
I found the information about my Ataxia very limited – this was a theme that was common place throughout the rare disease community. With this in mind, I made sure that any information I found about my condition, or indeed any rare disease, would be shared to all others concerned with a rare disease. As a person with a rare disease and campaigning at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, I gained the nickname “rare disease warrior” and was encouraged to establish a support group for Wales.
Atacsia a Fi – Ataxia and Me was the idea and it was GOING to happen!
This web based online support group for patients of Ataxia and other rare diseases is patient focused, as it is being set up by a patient with the focus on the patient voice. This “Mission” was made possible via the Findacure’s peer mentoring scheme, which – along with establishing www.ataxiaandme.org – has brought good experiences, great networking opportunities, and amazing friendships.
“Mission to bring the Order to the Lack of Order”
The introduction of www.areyouATAXIAaware.wales is the first phase of my mission to bring order to the lack of order of Ataxia. Being involved in such organisations is very rewarding and I am very proud to be conveying the patient voice and gaining respect at many levels around the globe. Please join me in celebrating International Ataxia Awareness Day, which is on 25th September, with Worldwide events to mark the day.