The Shy-Drager Syndrome (SDS) Support Group is a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals. Shy-Drager Syndrome is so rare that few patients, prior to diagnosis and few physicians have any knowledge of the disease. Because of the rarity and severity of the disorder, patients, their caregivers and family members feel isolated and confused about how to deal with the condition. Likewise, the medical profession, has difficulty in dealing with the diagnosis and treatment of this rare syndrome.
People affected by Shy-Drager need a support system to help them deal with the many issues sorrounding the illness. Patients must dealwith having a terminal disease, with little hope of being cured. Caregivers, most often a spouse, must deal with the emotional and lifestyle issues of having a disabled and terminal loved one. Other family members must also cope with watching a loved one suffer from a rare and terrifying disease.
Physicians also need support in dealing with the diagnosis and treatment of Shy-Drager Syndrome. Many physicians will see very few if any patients with the condition. Because of this, Shy-Drager is not a major part of medical school training.
