Our friend Angela has Episodic and Gluten ataxia. In her blog post, she shares her ataxia journey.
DIAGNOSIS JOURNEY
Hello, I am Angela Higgott, and this is my story. I have Episodic and Gluten ataxia. I was in my early thirties when my symptoms started, which were occasional but made me quite worried, so I knew something wasn’t right.
As time went on, my symptoms worsened, and I was sent to several different hospitals. It was a hard time as they were unable to give me a diagnosis and some of the doctors just said it was (all in my head) *eye roll*! I knew it wasn’t. You know when your body isn’t right, don’t you? I had to stop working when I was quite young, which I loved but coped with. I have always been so independent and have always taken care of family and friends. I was finding it very difficult to drive home and have since been stopped since my diagnosis in 2012. I have also been registered as sight impaired.
I was eventually sent to the Royal Hallamshire Hospital in Sheffield where I was seen by Professor Mario Hadjivassiliou, who diagnosed me with episodic ataxia type 2. I have since been told its episodic ataxia but uncertain what type. Two and a half years ago, I was also diagnosed with Gluten ataxia. It took many years to receive a diagnosis. I am 56 and have been diagnosed with Episodic ataxia for 11 years now. When I got my diagnosis, I was relieved that they had found something, and I wasn’t going mad! It was also very upsetting as I knew I wasn’t going to get better. Having the tests, I found out it is hereditary, and my mother also has it, she has been ill for many years now, but nobody knew what it was back then, classing it as a (medical mystery). I just hope my daughter, Chelsea, doesn’t carry the gene.
HOW ATAXIA UK HAS HELPED US
We are so grateful for Ataxia UK because they are only a phone call or email away. We can contact them if we have any problems or inquiries. There is also a quarterly magazine with many inspiring stories that makes me feel less alone. I find that the research news at Ataxia UK provides excellent help. Knowing that, even though it is so rare, there is still hope for us in the future. What helps me a lot is that I have a local support group to go to, which Sue Deane runs. She is brilliant, informative, helpful and a lovely lady, and she has also become a dear friend of ours. Things are never too much trouble for her, and it is lovely to meet other people with ataxia and discuss the different daily challenges we face…but it’s also nice to get out of the house.
WHAT IS THE IMPORTANCE OF FUNDRAISING
The importance of fundraising for me is that if you can get as much awareness out there as possible, people and doctors might recognise it more and get to understand it, too. When they see people struggling, they would be more understanding and reasonable.
Also, the more money raised, the better the research and further support will be given to ataxia patients. My daughter, Chelsea, fundraises each year for Ataxia UK, doing ‘Give it Up for Lent’, pub quizzes, and charity cake bake sales!
I also do what I can, as it makes me feel better to know I’m helping as much as possible.
