Discovering how our community talk to people about Huntington's disease, we spoke to Anna.

"I find it really important to spread awareness as people (including medical professionals) have misinformation about Huntington's disease and it is important to try and educate them."

About Anna

"I’m from the Nottingham and am in my 30s. We found out we had Huntington’s in our family as one of my parents started developing symptoms, but previously there was no known history. As there is a 50/50 chance of inheriting Huntington’s, I was tested in August 2014 and discovered that I too have the gene, but I hope to remain symptom-free for some years yet. Huntington’s disease is only part of my genetic make-up. I always say that if I didn’t have my genes exactly as they are, I wouldn’t be me. Huntington’s does not define who I am."

Getting help

"The Huntington's Disease Association are always supportive when I contact them. Another massive support is my genetic counsellor at Nottingham University Hospital. She is happy to meet with me as much as or as little as I want and lets me drive our contact. I have also been lucky enough to make some contacts through the Huntington's disease support network. It’s like having a second family that are there whenever I may need them, as they know what I may be feeling."

Talking about Huntington's

"For the last couple of years, I have been attending Nottingham University and presenting a lived experience lecture to them regarding Huntingtons disease. This lecture is presented to Pharmacy students. I find this opportunity really valuable as it provides insight to first-line medical professionals about an illness that would likely know very little about. It covers my journey and my mum's journey (although she has since passed from cancer earlier in the year)."

"I find it really important to spread awareness as people (including medical professionals) have misinformation about Huntington's disease and it is important to try and educate them. Pharmacists obviously play a key role in the treatment of patients so I think this opportunity is invaluable to them as it gives them understanding they would not have otherwise. They also find the session very interesting (based on feedback). It is good for me too as it helps me do something positive with what can be quite negative."

Thank you to Anna for sharing her story with us.

If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with our Helpline Adviser available to offer you support. 

If you would like to speak to one of our Specialist Advisers in your area. Please visit the support near you section of our website.