I cross many Borders, as a person who happens to have a rare disease
These borders are physical, geographical and physiological
That “lucky” rare disease, is Ataxia.
So, What is, Ataxia ?
Ataxia = A Greek, word meaning “Lack of Order”
Ataxia is a degenerative nervous disease that damages the cerebellum, the part of the brain responsible for coordinating movement. Therefore, many of the symptoms mimic someone who is drunk. This leaves many patients with ataxia frustrated because people, including doctors, have never heard of ataxia and therefore immediately misdiagnose their symptoms.
At around 25 years old I was diagnosed with ataxia. I first realised something was wrong when I was making a sandwich for work, and I couldn’t spread the butter on the bread.
I found this hard to communicate with the GP, who thought I was just tired. This went on for 7 or 8 years and every time I was diagnosed with something new. I knew that something wasn’t right.
Finally, after further testing and seeing a consultant, my GP said I had a rare condition called ataxia and that I wouldn’t meet anyone with this condition in my lifetime. After researching ataxia on the internet, I found out there was someone living with the same condition within five miles of me. Once I knew I had a rare condition, I wanted to reach out to the people who were in the same position as me and help them feel less isolated. I wanted to let everyone who has ataxia know that there are other people out there with the same condition.
For many years I was talking and raising awareness of Ataxia at many health-related events and during this time, on numerous occasions, was told that I “should do this within a charity setting.”
A big challenge that many ‘kitchen table’ patient advocacy groups come across when starting out is how to take their groups to the next level. But as I say, “we are in this together” and “if you don’t ask, you don’t get”- help is out there, all you need to do is just ask!
Many ’kitchen table‘ ideas turn out to be very successful, although there are many challenges. However, living with a Rare disease is a challenge and we are used to living many “adventures” and overcoming many challenges.
After a while, I took the plunge and established Ataxia and me (charity 1184030).
A charity founded by a patient, with a very patient-focused outlook. Indeed, we are based in rural West Wales, (a small village with a population of 17, making me truly 1 in 17 living with a rare disease!) with a global following. We have expanded our remit by including associated rare disease and movement disorders, as well as the main topic of Ataxia.
This wider remit has been welcomed not only by empowering patients with a wider knowledge of their condition, but also by the medical, health and pharmaceutical community as they can communicate with a larger cohort, all within one conversation.
Starting with a few like-minded patients we have increased our presence in the rare disease community, with a few volunteers interested in the charity and health sector.
We are very grateful that we are included in many platforms that promote patient advocacy, from the “experts in their own condition” the patients! Patient advocacy is something that is engrained in this charity. Knowing that we are helping and empowering other patients is a HUGE reward that we are very proud of.
The inclusion into the #IamNumber17 project is something that is very close to our motto of “patients helping patients”. In the Rare community (or rare family) we all need to be aware of each other and share information with each other.
International Ataxia Awareness Day – #IAAD – 25th September
A day when the importance of the Awareness of Ataxia can be recognised. Although Ataxia and me have lengthened this to Ataxia awareness throughout September, with the introduction of #AtaxiaAdvent (sharing 25 facts of Ataxia, one per day up to the 25th (this year we have some extra “animated” images that have been added to the #AtaxiaAdvent collection). We also make sure that Ataxia awareness is present throughout the year via our social media presence, plus a new volunteer is developing a “Did you know” social media project – to raise even more awareness of life-limiting rare conditions.