AJ's Journey with pediatric FSGS

AJ was just two years old when his parents first noticed symptoms of Nephrotic Syndrome. Later, a biopsy showed scarring on his kidneys, leading his diagnosis to change from Minimal Change Disease to Focal Segmental Glomerulosclerosis (FSGS).
Learn more about how you can help FSGS patients like AJ at KidneyHealthGateway.com
#MyKidneyHealthRevolution

[@scottyuwainat3899]

I Have FSGS When I Was 14 I’m 29 Now

[@Gelay_grande]

I had FSGS when i was 14 too I am 20 now…What are the things you’re doing to take care of your kidneys?

[@Gelay_grande]

Did it went back?

[@knight9780]

At 2years I developed nephrotic syndrome because of lack of fund for biopsy, I was treated for minimal change nephrotic syndrome before discovering it was FSGS. Am 26years now, Its pretty difficult for me here in African where we lack access to good hospital, and even fund for medication. Its not easy but I will continue to hold on

[@johnmezidor8363]

I was diagnosed with FSGS in 2005. I was 19 at that time eating healthy food low sodium food. 2016 my pc told me your fsgs came back. I call my nephrologist he put me on high dose prednisone (60 mg) decreased by 10 every week. Came back 2020 and last year ( October 2022 ) I am on low dose prednisone (5mg) now. Next week I will be on 2.5 Mg. I’ll be done my remission by the end of this month. sometimes I don’t even think of my disease anymore. I am 36 my GFR still high. Eat more fiber and less meat. No red meat 🥩 . Drink Water no soda .

[@brittanyvalle4364]

How are you doing now ? We’re u on prednisone ? How long was treatment

[@johnmezidor8363]

Sorry for the late response, I’m not on prednisone right now.

[@johnmezidor8363]

My treatment was 7 months

[@itxchriss]

I’m 15 with fsgs and Thea videos really help me understand my disease more

[@safiocashe3426]

All prayers go to this amazing child

[@aliaiqbal1201]

sending lots of love and prayers your way ❤❤

[@jasonsezno8197]

I'm like this kid... got on dialysis st 16 and my first transplant at 17. I am currently 35 and I am on dialysis again for the 3rd time in my life, waiting for a 3rd transplant or some miracle esrd reversing treatment that still has not come.

[@shiixnx]

Have that..
It really does suck.

[@charlottereid5326]

i have FSGS too

[@auravasquez9562]

Can he be friends

[@auravasquez9562]

Sup I have that

[@auravasquez9562]

I need to talk with someone

[@charlottereid5326]

you can tell me. I have been through all this too so if it is about that then i am happy to help.

[@ruth.k14]

Yes please go ahead

[@auravasquez9562]

And it sucks