Alport Syndrome

[gingerferret1]

Hi my four year old Granddaughter has just been diagnosed with Alport Syndrome could anyone help with any information on how her treatment should go or any links to other informative places or organisations on the internet that we can get help from.

[nevaehandhermom]

Hello, my daughter has Alport Syndrome. She was diagnosed when she was 2yo. She is

13yo now and she has to take medicine everyday twice a day, we have to check her BP often, make sure she drinks enough water, and we visit the nephrologist twice a year. We have been pretty lucky because her treatment so far has worked. Also a positive attitude helps a lot.

alportsyndrome.org/what-is-...

[gingerferret1 in reply to nevaehandhermom]

Thank you for your reply I have only just found it,Isabelle is five now and we are two years down the line from first finding out about Alports. We are just in the process of genetic testing of her brother who is two years old and Isabelle's Mum and Dad we are all coping well and learning all the time about the illness,up to press no treatment just regular visits to see the nephrologist. Luckily we are a positive family and very supportive of each other.