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Forum Name: Renal Failure

Question: alports syndrome


 donna harris - Mon Dec 01, 2003 1:10 pm

Help i have two daughters with alports snydrome.I'm trying to find some sort of preventive diet low protein low salt eg... which vitamins to take what to stay away from. There has to be a diet to help slow this process.They have an uncle whom died at age 21,grandmother whom died at 54,father whom has already had transplant at 40. aunt and uncle with hearing problems. All the info i have is women are mainly not affected, 54 is young.One of my daughters has had hematuria since age 2 now 19. If anyone can help please
 comicluva - Thu Aug 25, 2005 7:23 pm

Hi Donna,
My boyfriend have been together since school and he has Alports, he is just 22, along with his younger brother and his sister is a carrier.
We were just told yesterday that in just a few more years he will be starting dialysis and will eventually have a kidney transplant.
He has regular appointments with his doctors and we have a dietition that helps us a lot.
All the meals I cook have to match his diet so there is less strain on his kidneys. I am always checking salt levels and protien levels in foods when we are shopping (to make it worse I am lactose intolerant). If you wish to use salt in cooking etc there is a great salt called 'no salt' tastes the same but isn't really salt!
There are also good proteins, I discovered yesterday, such as chicken instead of red meats..
I strongly recommend you see a dietition and they will be able to tell you how much protein/salt they should be getting in a day for their age and suggest some great cook books specially for them, you'll find there are still plenty of yummy foods that she can eat and will help slow any kidney problems :)
 rms123sls - Mon Dec 05, 2005 11:22 pm

Donna,

My husband has Alports. He also used diet to hold off on having to have a transplant. He was only able to do this for three years. In 1997 he had a kidney transplant and has been doing fine. Have you considered transplant? Have you thought about transplant yet?

We were told to keep the protien down to about 3 grams per day. So that means lots of veggies. I am new to this forum but will answer any questions you only based on my experience.

Sherrie
sls7@verizon.net[/list]

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