Alport Syndrome Support Group

My son was diagnosed with Alport Syndrome 3 years ago. He has two children since then but wants more. We are concerned about how his disease will affect his children. Does anyone have information about this?

Thanks,

Dereksdad

From the research I have done it will depend on the type of Alports he has. It can be a dominant, recessive or a complete mutation. It is almost always X related so a male cannot pass it on to a son but a male will always pass it on to a daughter. However in females it is much less likely to have the complete renal failure and hearing problems that is does in males. Most problems w/ female don't occur til later in life. My husband has Alports and both my daughters show signs but there was no history of Alports in his family. He had to receive the bad X from his mother who died in her 50's of aplastic anemia but I believe she was also beginning to show signs of Alports . I hope this helps some.

Hi ~ belated information for you, but may be handy for anyone else that may view posts... Our family Alport's Synd was passed from generation to generation for as long as they have memory of kidney issues/failures and renal dialysis on my husband's side. When we got pregnant, we went thru genetic counseling and they researched and pretty much told us it was a sure shot our child would either have it or carry the recessive traits to pass on to their children. My husbands' family is Jewish from Eastern Europe - and evidently Alport's is wide-spread amongst this community. Our kids? Pediatrician does a urinalysis on them every year to monitor - starting at 6 months... hearing tests, etc. are used as monitoring for signs/symptoms. Son is now 7, and still passes urinalysis every year - hearing is a bit down. Daughter is 4, and has shown signs of proteinurea/high white cell counts in every test since 6 months. We 'treat' the whole family as if we all have it - the kids need to know how to live healthily to pass on to their babies when the time comes. We researched and found a bit of information pointing to vegetarianism as helping bring down the protein loads in Nephritis patients. For three years, we've been 'mostly' veggies - husband still craves the meat... we may have meat 1 or 2 times a week, the rest of the time making up our protein and fats with vegetarian sources. His Dr (who thought I was NUTS!) was amazed with his levels. He dropped from being almost on dialysis - last med's to try to bring levels down to a level he hadn't seen from him in over 10yrs. The Dr. will never admit that it's the veggie eating, but we've seen it correlate with his urinalysis results too many times to disregard it. Maybe it could help you and your kiddo's? ***BTW, even knowing I'd be passing it on to my babies, it would NEVER have changed my mind about having them. They are truly a gift from G-d, and I am blessed to have them in my life.