Autosomal recessive Alports Syndrome

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My son was diagnosed with Alports after he contracted meningococcal septicemia at the age of 2, it wasn't for another 2 years at the age of 4 that they discovered what it was he was suffering from. Genetics revealed that both me an my son's father(seperated) where both carriers for the same genetic faults resulting in the inheritance pattern. I'm obviously a carrier, my eldest son has the full Alports and I also have two other son's with my husband middle son carrier, youngest son no genetic faults. My eldest is on medication which he takes in a morning, has hearing liss in both ears so has the use of bilateral hearing aids. He copes with it all really well, me on the other hand can't help but worry and wonder why us! (As I'm sure I'm not the only one).
It's hard to take in the diagnosis even now an it's been 8 years but it's great to know that we arnt alone and we have support around us. I do have a youtube channel that we talk about appointments an life living with Alports if anyone wants to talk or just to listen.https://www.youtube.com/user/sarahlshaw1986
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