Contact Alport Syndrome in Pa either by email alportsyndromeinpa@yahoo.com or through their wordpress contact page: http://alportsyndromeinpa.wordpress.com/contact-us/
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ABOUT ALPORT SYNDROME:
Alport Syndrome (AS) is a genetic disease that affects the kidneys, ears and eyes. AS is passed on by the X chromosome. There are three types of Alport Syndrome: X-Link being the most common. Males are usually affected more than females (males only have 1 X chromosome, while females have 2.) The other two types are autosomal recessive or autosomal dominant form of the disease where boys and girls are equally effected. AS affects about 1 in 5,000 people.
AS usually starts off with having blood (hematuria) and protein (proteinuria) in the urine. Prolonged hematuria and proteinuria leads to kidney damage. Adventurally causing kidney failure as early as teen years in males.
Hearing loss is also a very common affect to AS. This can happen in early adoloscents. Hearing aids can usually help. Vision is the least severe affect of AS. Here are three problems the eye may have: Anterior Lenticonus (may have a slow progressive deterioration of vision); Cataract Formation; and Adnormal pigment of the retina called dot-and-fleck retinopathy.
As of right now there is not a cure. The only treatment is dietary and some medication to help ease the kidney work load.
To learn more about Alport Syndrome go to http://alportsyndromeinpa.wordpress.com or http://www.alportsyndrome.org
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