I'm upset. Nephew diagnosed with FSGS

[Deanne]

I have FSGS and it turns out it's really "Familial FSGS." My 13-year old nephew has been diagnosed with it now, too. I think I posted here before that he probably has it, but my sister just emailed me the confirmation so now it's much more real. I can only hope his course is as slow as mine. I was diagnosed with nephrotic syndrome 35 years ago, FSGS confirmed 13 years ago -- the same year my nephew was born. What an odd coincidence.

Leave it to my Mom to come back with the answer though -- she said she'd like to kick my Dad's family to the curb for this. I guess she's decided they're to blame.

[st789]

I understand how you feel.  Sorry for the bad new.  You can be a good guidance for him to live a full live despite of the disease.

[Sluff]

Sorry for the bad news,  I too have FSGS. 

[Rerun]

I love your Mom! 

                                 

[jbeany]

Hopefully, by the time he is symptomatic, they will have better options for treatment!

 

[KICKSTART]

Not sure here , but is FSGS hereditary? I always thought that they didnt know what caused it ? I have it as well ,when they finally gave me an explanation and when i asked what had caused it , they just said they didnt know . There was only one sinister question i was asked when i got kidney failure and that was ..had i been taking Neurophen ( in the uk , you can by it over the counter for headaches and stuff) I was never able to dig deeper about that question . ( by the way i hadnt taken it).

[Deanne]

Thanks for the words of encouragement. I think the fact that I've had FSGS for so long and it doesn't stop me from living a full life is probably very helpful for my sister (Kody's mom), which in turn will help Kody since he won't grow up with a family who tries to tie him down and watch his every move. I grew up being stifled / thinking I was going to die at any second. I know this won't happen for Kody and I'm happy if my illness contributes to his mental health in this tiny way. My mom does crack me up in a sad sort of way -- always looking for someone to blame and expecting the worst to happen.

On the hereditary question, it's now thought that there are some forms of FSGS that are hereditary and a gene has been identified (just learned this yesterday from a quick web search). They're calling it familial FSGS, or FFSGS. My family contributed to a Harvard familial FSGS study when Kody first started spilling protein a few months ago. My sister and I will both crack up if we get results back from the study and they indicate our Mom is a carrier! Gotta find something to laugh about! :-)

[jbeany]

Wonder if it's one of those things that both parents need to have a recessive gene for, like Tay-Sachs?  Then she would be equally responsible. . .

Gotta laugh about something to keep from screaming, Deanne!

[Amanda From OZ]

I'm sorry to hear about your  nephew. One ONLY positive aspect about heredity diseases that i found is that i have people who are educated about the problem and can support and teach me and actually UNDERSTAND what we go through.

I hope his development of the disease is slow.

Amanda
xxoo

[goofynina]

Sorry to hear about your nephew Deanne, but i am sure with all you have learned about the disease, you can educate him any way you can to help him stay off of dialysis as long as he can.  Good luck to you both