I am Now Ataxia Aware

As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.

Up until two months ago I had never heard of Ataxia or other rare diseases. As a third year English Literature and Creative Writing undergrad unless it was Shakespeare, I was oblivious. Out of chance I saw an advertisement on my university job board for a volunteer content writer for a charity called Ataxia & Me. I thought I would take chance and maybe get some real-life experience outside of the classroom, so I applied. Here I am a couple of months later and I can now proudly say that my name is Kirsty, and I am Ataxia aware!

From working with Alan, I have been so blessed and privileged to read everyone’s journeys and help to create a platform to raise awareness not only of Ataxia but other rare diseases such as Poland Syndrome and ITP.

When joining the rare disease community, I wanted to make sure that I educated myself as much as possible from hearing your stories, attending webinars, and talking to other rare disease charities. The most significant lesson I have learnt from my experience is that raising the profile of disease and the subsequent charity is the key factor. Misdiagnosis is common. Only by raising awareness can this help try to mitigate misdiagnose, ensure that people are aware of the symptoms.

One question you might be asking yourself is what can I possibly do to help?

Use social media: Since joining the rare community I have used my social media to share information about events I have attended, supported other people’s posts about rare diseases and followed charities pages (@findacure_fdn on twitter). Therefore, I can stay informed about any new research or keep an eye out for webinars or events that interest you. Not only will you learn more information you will be able to meet people who are affect by rare diseases as well helping you not feel alone.

Involve your community: Raising awareness about rare diseases can be crucial and improving the profile of charities which provide support. For example, on Rare Disease Day (29th February) Alan Thomas convinced his local council offices in Carmarthen to turn their lights blue raises awareness of rare disease on a bigger scale!  

Share your story: When you are a sufferer from ataxia/another rare disease or a family/carer you can use platforms like this to share your journey.  

If you would like to share you story or a family member it can be a daunting task of knowing where to actually start. To help ease any worries over where to actually start I have created a template which you can follow (which can be seen below). Feel free to copy and paste this into a word document and use as a guide to help you tell your story.

If you have any questions or would like the blog template sent to you please feel free to reach out to us on any of our social media platforms or using our email address.

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