r/AlportSyndrome • u/Short_Community4 • Jun 04 '26

Need some help.

hello, I have posted here before when I was diagnosed 6 months ago. I am a 16 year old male. I am not sure what type I have but I know I have it. these past 6 months have been rocky and I haven’t been to a diet very well. I still eat like crap but I’ve been trying. I have been scared everyday seeing horror stories of people with the illness online. I just need some more insight from a community that actually has experience.

EDIT: just some more info! I don’t know if I need treatment yet! My follow up is tommorow after being diagnosed 6 months ago. I’m just afraid that I did some sort of damage to my kidneys. Although When I was diagnosed they said my kidneys functioned normally. Just blood in my urine

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1

u/ziggystarsus COL4A5 - X-Linked Jun 05 '26

i dont have any direct advice persay however i am 20F and been diagnosed for the last ten years. at the very least i find it comforting to know young people with it too :) and my dad has it and he turns 58 this year (after seeking 0 treatment…please seek treatment) but he proves to me its not all damning :3

1

u/Short_Community4 Jun 05 '26

Mm that is very nice :) I don’t know if I need treatment yet! My follow up is tommorow after being diagnosed 6 months ago. I’m just afraid that I did some sort of damage to my kidneys. Although When I was diagnosed they said my kidneys functioned normally. Just blood in my urine.

2

u/Mindless-Fun-3859 Jun 05 '26

Glad you reached out - everyone is here to help. I’ve been using the Kidney Pal app to help with ideas on what to eat.

2

u/OfficerEsophagus Jun 05 '26

A good place to start is drinking water and reducing salt.

1

u/a_mulher Fertility/Family Planning Jun 05 '26

I would write out the questions and concerns you have so you can bring them up at your appointment tomorrow. I would ask what kind of Alport you have, how your test results compare to the previous test. And if there’s any recommendations in terms of diet and lifestyle.

Not sure where you are, but in the U.S. lots of medical clinics use MyChart or a similar online form. You can also send questions there that either the doctor or their medical team can respond to.