The '˜disease of families'

Helen was diagnosed with Huntingdon’s Disease, which she inherited from her mother, in July 2012. Now 43, she has been experiencing symptoms including depression and severe mood-swings.

Helen explains: “I cannot concentrate on more than one thing at a time, such as listening to different people talking and I can’t remember dates, events and how to get to places, so I must write things down or I won’t remember.”

“My balance is affected so I bump into things and hurt myself. I can’t sleep well at night because of the movements in my arms and legs so I am very tired during the day which makes it even more difficult to concentrate and keep my balance so I end up falling asleep during the day”.

She says the disease has had a ‘‘huge impact’’ on her family, ‘‘not least because I can’t do all of the ‘mum’ things I used to.’’

‘‘It is difficult because we live in the Southern Trust, and unlike Belfast or South Eastern Trust patients I cannot access a specialist HD nurse.

‘‘Although our GP is very good he cannot provide the specialist services I need. HD is so complicated that you really need to see an expert regularly especially to help with things like movement problems, speech and medication.

‘‘Some medications can help one symptom but make others worse so it needs to be reviewed regularly as it can be dangerous. It shouldn’t matter where you live when you have a disease like HD but in Northern Ireland it does and it’s totally unacceptable!”

While the whole family have really pulled together to help Helen, her daughter Chloe has become heavily involved with the Huntington’s Disease Association as a member of the youth committee.

“Coping with Huntingdon’s is extremely difficult as the condition is constantly changing. However, we have a very strong family and friends to support us,’’says Chloe.

‘‘Also, HDANI has been a huge help to us as a family. My mum and I attend the support group in Armagh which takes places every month. It gives us a chance to ask questions and share experiences and lets mum meet other patients.”

Chloe adds: “HD can be very scary as it means lots of changes but my sister and I also take part in special HDANI youth events with a counsellor and other young people and that really helps us deal with things.

‘‘I also got involved with fundraising for the charity because I want to help others in the same situation as myself. Funding is so difficult to find and this year we’ve not been able to run any youth events yet and I know young people like me are suffering as a result because no one else understands what we’re going through”.

We also spoke to Lynsay Hands, a 38-year-old mother of three from east Belfast, who was 16 when her mum was diagnosed with HD.

“On the 23rd August 2011 my whole life was turned upside down when my test results came back positive. When the nurse told me that I had HD I screamed and ran out of the room,” says Lynsay.

“Six years on and I suffer from severe depression and anxiety which makes it hard for me to go out. I also have really bad mood swings and I’m lucky to get a couple of hours sleep a night. I get the odd movement in my arms and legs which makes walking about very hard.”

She adds: “My kids Amy-Lee (16), Carter (14) and Katy (11) help around the house, my brother and sister are nearby and I’ve friends that do the shopping for me which is great. I do get times were I would just sit and cry and say why me? but I keep fighting for the sake of my kids.”

A year ago Lynsay started going to the HDANI Belfast support group.

‘‘The first time I went I cried for two hours but it was the best thing because they listened to me and answered my questions. I shared my story and heard other people’s.”

Lynsay says she worries about her children and whether they will get HD.

‘‘They know that I have the disease and they’ve seen their granny suffer so know what lies ahead. I try to answer their questions honestly but it’s really hard. HDANI started a youth group which was brilliant because the kids went away and did stuff that I couldn’t do with them and spent time talking about HD with a counsellor and other kids their own age.

‘‘It really helped them and took the pressure off me. I know lots of charities are struggling for funding but I really don’t know what I would do without HDANI- my Huntingdon’s family- and would love to see more chances for patients and carers to come together and more help for our kids”.

To find out more about HD visit www.hdani.org.uk