New Project Gives Rare Disease Patients Chance to Share Their Story
August 19, 2013
Relevant Stories is focused on providing useful and clear information about evidence-based alternative treatment in an easily-accessible form. Alternative treatments are effective for those with well known diseases like cardiovascular disease, metabolic syndrome, autoimmune disease, and depression, but also for those on the periphery for whom conventional medicine misses the mark. Those with rare diseases (diseases that affect less than 200,000 people nation-wide) are nearly overlooked by the medical mainstream. They are left on their own to find treatment outside conventional medicine, because doctors rarely recommend alternative treatment options claiming they lack scientific backing.
My daughter and, through her, I am part of the rare disease community. She has Sanfilippo Syndrome – meaning a few messed-up genes cannot produce a functional protein that helps break down long sugar molecules inside every cell in her body. Her cells are dying, and she will die – probably while she’s a teenager. There is no cure and there is no treatment according to her conventional doctors.
Courageous individuals and their caregivers who live bravely each day with rare diseases – “the few” – inspire this site. Here they tell their stories about how alternative treatment has helped them. The rare disease community personifies conventional medicine’s inadequacies and government’s inequitable funding, and they illustrate the vast need for alternative treatment awareness and research. Fortunately, research is beginning to reveal the power of alternative treatment, and Relevant Stories’ mission is to bring this information to medical experts, elected officials, researchers, and the general public– “the many” – in a format that will strike the heart and hopefully bring about change – one story at a time.
Relevant Stories is a growing resource for parents, caregivers, medical experts, or individuals to learn about alternative treatment from a multitude of perspectives: the patient’s, the provider’s, the caregiver’s/family’s and the researcher’s. We visualize a continuum with the scientific community on one end and alternative treatments on the other. Science may someday find a cure for diseases for which conventional medicine provides no help, but until that day science can research alternative treatments and provide assurance that they have affect.
Every story and treatment conveyed here represents the power of the individual to help themselves. But they desperately need the help of the many… the medical and scientific communities, the government, and the public. Relevant Stories’ mission is to combine these forces to help the few whose stories are written here.
We need your stories; we need your help; and we humbly thank you for both.
Submit Stories at https://www.RelevantStories.org
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