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From the lens The Facts on Alport Syndrome.

Do you or a loved one suffer from Alport Syndrome? Do you know of a good resource I've overlooked? Do you have any questions you'd like me to tackle in the FAQ?

  • spirituality Jan 8, 2010 @ 5:35 am | delete
    Sounds awful. But very well explained, so blessed by a squidangel today. I hope the disease is progressing slowly.
  • Stormy2 Jul 25, 2008 @ 8:25 pm | delete
    My love has alports, as does his brother, his other brother and one that died. He was on dyalisis in 91 and got a transplant from me in 92. It was good until now. He is now in need of a new transplant. On dialysis again, not well, torn muscels in various parts of his body, colondectomy, removed gall bladder, heart bypass, barrets syndrome, diverticulitis, carpel tunnel operation, hernia, neuropothy, blood clots, pnumonia, phsydocyst in his pancreus, weak, and it goes on and on. (Spelling not so good tonight). Our son has Cerabral Palsey and his parents have alshiemers disease. Some days I get depressed, but do love them all so very much. Each give me joy in their own way.I would love to say it gets better, but it does not. So I am here to encourage you to live your life to the fullest, not just for yourself, but your family too. What you leave behind in your heart is what will be remembered not your medical conditions. God Bless each and everyone of you.
  • duckretainer Jan 6, 2008 @ 2:52 am | delete
    Thanks for getting this information together. It is very helpful. I especially like John's account of everything he went through. My 20yr old boyfriend is currently in renal failure due to alports so I like any information I can get on the subject.
  • elhughes03 Oct 13, 2007 @ 11:44 pm | delete
    My boyfriend and his bros. are txtbook They are the only case were all 3 brothers that have the symptoms. They have all recieved their kidneys by the time they were 26. My boyfriend is 24
  • FESA Sep 4, 2007 @ 10:37 am | delete
    Thanks so much for sharing your personal story and the information about Alport Syndrome. I wish you and your family all the best in your struggles with this disease. God bless! Fran

by

seitler

I'm a dad of a little baby boy who appears to be a carrier of Alport Syndrome, an hereditary kidney disease which runs in my wife's family.

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