4/1/2023 0 Comments Nancy lazarusI never wanted anyone else to have to go through what I went through. And that went on from doctor to doctor for eight years until finally I wasn’t able to get food down and that’s when I was diagnosed. And my GI told me to take Tums and I said, “No, this isn’t normal.” And he said, “Take Tums.” There’s nothing wrong with you. I started having esophageal spasms that had me curled up in a fetal position. I struggled with it for eight years being misdiagnosed and pretty much ignored by the medical community because my symptoms happened backwards. How did you become involved in rare disease: I have achalasia. There is a desperate need for research and awareness to bring this disease to the public and in turn to medical personnel so that those with achalasia can procure timely diagnosis and treatment. It is most often misdiagnosed causing years of pain and struggle. To add to the frustration of this disease, most doctors will never see a case of it in their entire careers. Within the diagnosis of achalasia there are three types, 1, 2 and 3, which compounds its complexity. However, the question remains whether this is due to raised awareness or other environmental factors. According to recent studies, rates of incidence seem to be rising. Prevalence (existing cases) and incidence (newly diagnosed cases) varies greatly per country. Believed to have a genetic predisposition, with an autoimmune component and a viral trigger, approximately 1 in 100,000 are diagnosed annually. Achalasia sufferers have damage to the nerves of the esophagus which makes swallowing and the passing of food and liquid into the stomach extremely difficult. Organization: Achalasia Awareness Organizationĭisease focus: Achalasia is a rare, incurable, and progressive autoimmune esophageal motility disease with only palliative treatment.
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