I am Now Ataxia Aware
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 would also like to share your experience with Ataxia or other rare condition, please get into send them to us through our social media:
If you have any questions or would like the blog template send to you please feel free to reach out to me on Twitter @kirsty_louise_8 and I would be happy to help you in anyway I can!
Please feel free to select your own title which summaries you and your story. It could simply for your name, your name accompanied with your condition, an event you have engaged in or it could be a quote from your article. Here are a few examples we have already on our website:
- Emily’s 427 Mile Trike Ride with Ataxia
- More Than What’s on the Surface
- Journey to Diagnosis
- Lisa Antonelli Cole’s Long Journey to Diagnosis
- Linda’s South African Story – “I have Ataxia, talk to me!”
You are welcome to place photos that you would like to be posted within the article. Pictures could include yourself, a family photo, and/or a picture of an event you have participated in. We will include all your photo within the main body of your blog post and will use one of the photos as the thumbnail for the piece. You are under no obligation to submit photos if you do not wish to.
TRY TO AVOID
In your blog post, please can you refrain from mentioning the following:
- Religious Views
- Medical Advice (only refer to personal experience)
Feel free to use your opening paragraph(s) to introduce yourself to people who may be reading your post. You are welcome to state your name, age, your occupation, hobbies, passions, summarise why you are writing a blog post, etc. Allow people the chance to get to know who you are. Do you have a rare condition? Are you sharing a family member’s story? Are you a carer? Here is an example below:
My name is Kirsty and I am twenty years old. I am a third year English Literature and Creative Writing student at Cardiff University. I have a huge passion of musical theatre and love performing at any opportunity I can! I wanted to write this blog to help people understand rare conditions like Ataxia, though I do not know anyone who is suffering directly from Ataxia, I want to help raise awareness for the condition and get people talking about it.
Share your story. Your journey to diagnosis and/or your mental health. Only talk things you are comfortable with sharing. Any events that you have participate whether that be for charity, for yourself or both. We encourage you to plug your own social media if you have podcast talking about rare conditions, you have created a Facebook group, you have YouTube channel, etc. You could post any comments or messages that you wish you had heard when you were diagnosed.
We would like to thank (YOUR NAME) for sharing their inspirational story with us. If you would like to know about (THEM) be sure to follow them on Twitter (@), Facebook (@) and Instagram (@).
Please indicate you Social Media platform. If you would not like your social media include please leave it blank.