Rare Disease Patient Receives Foundation’s Prestigious President’s Award 2019
BETHESDA, MD) The American Porphyria Foundation is proud to announce that Terri Witter, Broken Arrow, OK has won the President’s Award 2019. The President’s Award is a time-honored tradition of the American Porphyria Foundation. The purpose of the award is to honor members who have gone above and beyond to support the Foundation and to increase awareness of porphyria.
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Porphyria is a rare, metabolic disease that affects fewer than 200,000 Americans. Due to the wide array of symptoms and the rarity of the condition, porphyria is often misdiagnosed and misunderstood. Porphyria is not a single disease but a group of eight inherited genetic disorders that differ considerably from each other.
A common feature in all the Porphyrias is the accumulation in the body of porphyrins or porphyrin precursors. Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of Porphyria. The terms porphyrin and porphyria are derived from the Greek word “porphyrus,” meaning purple.
Terri lives with Acute Intermittent Porphyria (AIP). The most frequent symptom is severe and unrelenting abdominal pain that is usually accompanied by nausea and vomiting. Other symptoms may include heart palpitations, seizures, and hallucinations. Porphyria is known as one of the most painful diseases known to humankind, and there is no cure. Patients have characterized AIP as “flaming swords,” “a volcano in my abdomen,” and “pain that is incompatible with life.”
Terri was diagnosed 41 years ago. Since then, she has been a fierce advocate for awareness and support among her peers. Terri has been involved in seven research trials, educated medical students at the Mayo Clinic, trained nursing students and staff at several hospitals, presented to the FDA to get research drugs approved, and is very active as support to other patients through the many social media platforms of the APF
We are proud of Terri and pleased to honor her advocacy with the APF President’s Award 2019.
THE AMERICAN PORPHYRIA FOUNDATION
Supporting the Porphyria community since 1983, the APF’s mission is to improve the health and well-being of all individuals and families impacted by Porphyria. The APF maintains a focus on education, advocacy, support services and research for the prevention, treatment and cure of the Porphyrias. Additionally, the APF serves patient advocates to public, private, and government agencies interested in funding research and educational programs.
Their Scientific Advisory Board is comprised of the world’s foremost experts in porphyria management, diagnosis, and research. For more information on Porphyria and the American Porphyria Foundation, visithttps://porphyriafoundation.