FSGS - Genetic Qs

[Meagain24]

I suspect FSGS is genetic due to a parent having similar issues and having to have a transplant. Awaiting genetic results.

I’m really worried my child will have it. Has anyone had their children tested? I have been advised to wait until they are potty training to get a sample of urine to check. Also advised you can’t genetically test unless child agrees at 18. (Based in UK)

Does anyone have any experience of this? Or have any knowledge?

I’m still not really clear if it’s likely something that has happened since birth or if it typically develops later on in life?

[Capecorp]

Hi Meagain,

My husband has FSGS and is the third person in his family to have had a transplant. No one has had genetic testing yet although I am gently pushing for it.

Our children are all into double digits now and have a urine dip test any time they see the GP. (when they were younger, I bought some myself to test every 6 months or so at home). Of course this doesn’t stop me worrying but I am getting better at trying not to panic about it!

I was also advised not to have our children genetically tested. DNA tests without informed consent are an ethical minefield. Hopefully my husband can be tested to give us some idea of the cause.

I hope you get some clarity from your results and wish you all the best.

BTW At least one of our children did have a urine test in a little stick-on plastic bag thing while still in nappies - I would not recommend it!

[Meagain24 in reply to Capecorp]

Thanks so much for replying - this has really made me feel better.

What age was your husband diagnosed?

This was my understanding that it would be managed via urine testing when they are a bit older. We’re still fairly new to this, with FSGS would it always show in the urine? I wasn’t sure if they would need a yearly bloodtest aswell.

[Capecorp in reply to Meagain24]

My husband’s was flagged at age 3. He was tested for an unrelated issue and they found proteinurea. He was then tested to monitor kidney function and eventually diagnosed with FSGS from a biopsy (as an adult). He had no treatment until in his 40s. I doubt that’s the protocol today.

See what your pediatrician suggests about testing. I guess you could check the blood for high creatinine but blood tests are pretty unpleasant for little ones - whereas peeing in a pot is always great fun!

[Meagain24]

Really appreciate your replies 🙂

it’s actually my husband that has this, not me but I write some posts on here for him sometimes.

He wasn’t diagnosed with any kidney issues at all until he was in his 30s - but had never had a bloodtest before so we have no idea if he had it from birth or it was something that developed in late teens/early 20s.

We have one child before this came about but would love a sibling for our first child, but I am so worried it’ll be passed on. I try to tell myself hopefully they will never get it and if they did hopefully medication will have moved on by the time they need it. It’s just such a lot to think about!

[Kidme]

Hi! I just want to mention that some rare genetic kidney diseases do not cause protein in the urine. My family has ADTKD which will not cause protein leakage. Even many nephrologists are not familiar with it and it can be diagnosed only by genetic testing. Genetic testing is the way to go although there's a few genetic KDs that are not flagged by the testing companies. More info at rarekidney.org