WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

This study explored the needs of patients with Huntington's disease and family carers and their views on support services provided by a community-based unit.Key points Although this service was considered to be supportive, the need for flexibility was stressed. Patients felt it was important to be known as the person they had been, despite the changes caused by the illness. Service provision in a dedicated unit is an appropriate way to support patients and carers.It is helpful to allow patients control over timing and frequency of contact with health professionals.IntroductionThis study looked at the needs and coping strategies of people with Huntington's disease and their relatives or...

How the battle against one crippling genetic disease has come to serve as a model for battling others.On the evening of June 10, 1806, Capt. David Hedges came home to find his wife, Phebe, ironing clothes. All seemed fine, and he went to bed. But the next morning, Phebe Hedges was gone.Neighbors searched everywhere in the community of East Hampton, Long Island, where the Hedges were a prominent family of judges, silversmiths and whaling-ship captains, active in town politics and regular church-goers. They traced the woman's footsteps from her home through the fields and down to the shore. There the...