SDS Support Group Mission Statement
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 surrounding the illness. Patients must deal with 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. Therefore, physicians need support with these patients if they suspect a diagnosis and potentially must begin treatment. The goal of the SDS Support Group is to gather information from each group of people involved (Patients, Caregivers, Family Members, and Physicians) and disseminate that information to all. The SDS Support Group is an information center and a "Helping Hand" for affected people.
Through various programs, including the continuation of the national patient/caregiver support group meeting, support of local groups, the toll free help line, quarterly newsletters and a website, the SDS Support Group can reach many more people in need. The support group also works closely with physicians who are treating the patients as well as those who are involved in the essential research to discover a cause, modes of treatment, and hopefully a cure.
The Shy-Drager Syndrome Support Group also would like to reach out to physicians newly involved with the disease. Information about the disease and tips on explaining it to the patient will be provided through several modes, including the website, links to the American Autonomic Society, access to a referal base of experienced physicians, and educational meetings.
By sharing information, resources, and support the SDS Support Group will create a "Circle of Hope" for those affected by SDS.