The Paas Network | CaringBridge

The Paas Network The PAAS Network

Latest post: 5/4/2016
Welcome to the Parents Against Alport Syndrome CaringBridge website. We've created it to keep friends and families updated on our loved ones battling Alport Syndrome.

Get started by reading My (Our) Story & the latest journal entries.  Visit the photo gallery, sign our guestbook, send us your story about your loved one.

Want to keep in touch with Adin?  Click this link: http://www.adinupdate.wix.com/newbridge




Alport Syndrome is an inherited disease of the kidney that also affects the inner ear and eye. It is estimated that at least 1 in 5,000 people are affected by AS, mostly boys. It is caused by a mutation in a gene on the X-chromosome for a protein in connective tissue, called collagen.  Boys only have one X-chromosome, girls have two X-chromosomes, which buffers the effect of the mutated gene. Women can transmit the gene for the disorder to their children, even if they have no symptoms. 

Symptoms usually occurring by the time the boys are teenagers:
· Brown, pink, or red urine for several days, associated 
  with a cold or flu. This eventually stops when the child 
  recovers and can be very frightening but is not harmful.  
· Swelling around the eyes.
· Loss of hearing and/or vision.
· Blood in the urine, detected only with a microscope or
  a urine dipstick.
· High blood pressure.
· Kidney failure.   

Once diagnosed, medication for high blood pressure and varying levels of electrolytes, dialysis for Chronic Kidney Disease (CKD), also called End Stage Renal Disease (ESRD)and kidney transplantation are needed for survival.  Hearing aids are needed to deal with the hearing loss and glasses are required to compensate for the slow, progressive deterioration of vision, which may also lead to cataract formation requiring surgery.   

There is no cure for Alport Syndrome, no treatment that has been proven to prevent the development of kidney failure in people with AS, and no reversal of hearing or vision loss caused by AS.  Research continues. 

For more detailed information about Alport Syndrome, please visit  www.alportsyndrome.org (http://www.alportsyndrome.org)                   

 

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