When my father (who passed away nine years ago) was diagnosed with Huntington’s Disease (HD) I felt very alone because nobody knew what it was. People would ask “is it like Parkinson’s?” or “is it like Muscular Dystrophy?” Nobody could relate. Nobody understood. It was because of that experience that a vision of mine was always to start a support group for people affected by HD, a safe space where people could share their stories and experiences and relate to each other.
In November 2011 I went through the Predictive Testing process and tested positive for HD, this had a huge impact on my getting involved with the Huntington’s Association of South Africa (HASA), shortly after which I was made a Director of the charity. My positive test results also helped to put the wheels in motion to get the support group from Cape Town up and running. I’m proud to say that I have been running them in Cape Town for over a year and a half now and they have been a huge success. We have a dedicated Facilitator who facilitates the sessions.
Because of the success of the Cape Town (Western Cape) support groups, in March this year (2013) we ran our first support group for people affected by HD in Pretoria (Gauteng).
One of the things that keeps coming up in the support groups is the overwhelming need for a care facility for people affected by HD.
In March this year myself, Thelma Naude (member of the Cape Town support group) and Jenny Selfe (my mother), had a meeting with Dr. Sean Boumann regarding a care facility for people with HD. Dr. Boumann is a Psychiatrist at Valkenberg Hospital and we were hoping he could assist us with the overwhelming need for care facilities for people with HD. We discussed how desperate people at the support groups are as they can’t find a place for their loved ones when they can no longer take care of them. Dr. Boumann then contacted me a few days later for a second meeting with him and Dr. Juan Schronen (Psychiatrist specializing with HD patients). Dr. Schronen highlighted and shared his experiences with his patients with HD which reiterated the need for a care facility. Thereafter Dr. Boumann escalated the matter to various people including Linda Herring, the Head of Public Health for the Western Cape.
Dr. Boumann made contact with me in June to schedule a follow up meeting. He was extremely happy to tell me that ten beds have been allocated for the assessment and management of neuropsychiatric disorders within a psycho-social rehabilitation unit in the new hospital being built at Valkenberg Hospital. It is envisaged that for the most part these beds will be used by persons with HD. This is part of a major programme that will take approximately five years to complete.
So at last, after countess efforts, within the next five years we will have not only a care facility for people with HD in the Western Cape but also very likely a training centre for the nurses who will be taking care of those patients.
So things are definitely improving rapidly in terms of HD support groups, funding, awareness and care facilities in South Africa.