It is with great pleasure that I invite you to take part in this charity fund raising event, organised by Burnie Allied Health Professionals on behalf of Huntington's Disease Association Tasmania. It is an event organised to raise funds for Rebecca Wise. The funds raised will help Rebecca lead a meaningful and peaceful life.
Rebecca Wise is 32 years old, daughter of Cyril Wise. She has two children that she has not been able to care for. Rebecca needs 24/7 care as most sufferers are vulnerable to falls and experience difficulties with eating due to poor muscle function. With limited resources, aged care facilities are not equipped to provide one on one care for most Huntington’s disease patients.
Huntington’s disease is often characterised by involuntary movement and associated intellectual, emotional and behavioural problems. Typically, patients have a “late” onset with symptoms often appearing when a person reaches their mid-thirties to forties. There is not yet a cure for this disease.
As described by Dr. Ira Shoulson, the advancement of Huntington’s disease after diagnosis can be divided into five stages (Dennis H. Phillips, 1981):
· Early Stage – diagnosis of HD, patient can function adequately at home and work.
· Early Intermediate Stage – patient can still work but at a reduced capacity. Daily affairs can be managed with some difficulties.
· Late Intermediate Stage - the person can no longer perform work and or manage household tasks. They need significant supervision or assistance to handle daily tasks including financial management. Other activities may also require minor aid.
· Early Advanced Stage - loss of independence in daily activities, the person can still live at home with family support or professional care.
· Advanced Stage - the person with HD needs total support in daily activities and professional nursing care is typically needed.
“People with HD usually die about 15 to 20 years after their symptoms first appear. The cause of death is not the disease itself but complications such as pneumonia, heart failure or infection developing from the body's weakened condition”.
Ira Shoulson, Clinical Care of the Patient and Family with Huntington's Disease Cambridge: Huntington Society of Canada, 1980 p.8
*** Photo credit: Baz Ruddick, The Advocate 06/10/2016
*** Video credit: WIN News, Tasmania