READER RESPONSE:RE: My Health Experience, June 29th issue, Healthplus
Dear Madam/Sir,
While pleased to see the article “A death sentence has been lifted”, My Health Experience by Catherine Dearden in the June 29th issue of Healthplus in which she relates her own story of living with the threat of Huntington’s disease (HD) in her family, I feel that it is just one of the many experiences of people affected by HD.
Yes, it is true that there is no cure for this horrible disease (yet) but some symptoms can be treated. It can have devastating consequences on individuals and their families and yes, it may be “the cruelest disease of all” but the article did not capture the strength shown both by individuals and families to insist on living life to its fullest and the benefits of the support offered by loved ones, caring professionals and voluntary organisations.
Once it is known that the HD gene is in your family, life changes for all concerned. But when the realisation comes that, for the moment or for maybe many moments, nobody died – the picking yourself up process must start followed by the dusting off and then life goes on.
In a recent address to HD families, Huntington’s Disease Association of Ireland’s patron, President Mary McAleese, said: “It is important not to travel this difficult journey alone.”
After the initial shock some people do withdraw. Because of the pressures and stresses created within the family some people refuse to accept the news and move away from the very friends who could offer support. Some even move house in an attempt to prevent others from knowing about the family secret.
HDAI is in existence for 25 years and offers services to all those affected by HD encouraging them not to make that journey alone. The history of the organisation is filled with brave men and women who came together to make that journey together. While the sadness and the crying is never far away, newcomers often express surprise at the amount of laughter and humour exhibited at our support meetings. We believe in the healing power of the group, in addition to providing individual support for those who need it. Confidentiality is one of the cornerstones on which our support system is built.
Stigma and fear of discrimination is the reason HD is often referred to as “the Hidden Disease”.
On June 30th members of the UK HD community celebrated the launch of an All Party Parliamentary Group for HD. Its “HiDden no More” campaign hopes to improve the lives of people with HD and their families’ future. Until the cure for HD is discovered, we continue to offer information and support to all those affected by HD but, most importantly, we continue to bring hope because without hope the journey is indeed an extremely difficult one for all involved.
Denis Ryan
HDAI chairman
Huntington’s Disease Association of Ireland
Carmichael Centre
North Brunswick Street
Dublin 7
