Genetical Kidney Disease, female, 24

[alice_lirey]

Hello! It’s my first post here! I am female, 24 y.o

I have CKD, stage 4. I am supper anxious and want to find support and exchange experience!

Also, I am interested in finding people with genetic kidney failure (PAX2 gene)

[bumblebee_tuna]

Hi there, I too have a genetic CKD but a different gene (ACTN4). Stage 4 at your age is quite fast, have you started looking for a donor so you can have a preemptive transplant?

[alice_lirey in reply to bumblebee_tuna]

Hey! Yeah, the progression is pretty fast, that’s why I’m anxious and nervous. I hope that I can transplant from my father, but also hope that I will stop progression by following diet and doing sports. Could you share your story? How fast was your progression and at what age?

[bumblebee_tuna in reply to alice_lirey]

My progression was a lot slower, I was diagnosed at age 18 with proteinuria and reached dialysis at age 48, I've been on PD for about 2 year now.

[userotc in reply to alice_lirey]

Does your research to-date indicate that nutrition & lifestyle can help manage genetic ckd, as you've indicated?

Whilst I can share with you the very positive effects of a Nutritional Therapy protocol on my my 67-yr old mum's ckd (likely caused by high BP and/or hrt drug), I'm unaware of genetic ckd.

[alice_lirey in reply to userotc]

hello! I cannot really estimate the full benefit of NT, but I can say, that after refusing meat consumption, my analyses became better! Now I’m trying to do sports and count protein intake and hope that it will help me somehow. Also I’ve read about Chitosan, but I cannot find enough info

[bumblebee_tuna in reply to alice_lirey]

I don't know what is your diagnostics, but if it's FSGS like mine, NT is not likely to make a big difference. The nephrons get damaged over time and scar. Once a nephron is scarred, it is not coming back and your body does not make new nephrons.

The good news is that you are a good candidate for transplantation as the genetic disease is not likely to effect the new kidney.

[userotc in reply to alice_lirey]

Well I guess there's no harm in contacting qualified NTs that specialises in renal and asking about their experiences in genetic ckd, ideally if any successful case studies.

I can send some links to qualified NTs if you think that's worth doing.

[bumblebee_tuna]

It's natural to be anxious about it, but start educating yourself on dialysis and the different options for renal replacement therapy. Dialysis is not a death sentence, you can feel well on it, and it is just a part of a bigger journey. The more prepared you are, the easier the transition (if it gets to it). Let's hope you can get the transplant.

My mom had a transplant from her mom that lasted many years.

[alice_lirey in reply to bumblebee_tuna]

Thanks! Yeah, that’s why I’m here, actually! Preparing myself and trying to get as much info as I can

[bumblebee_tuna in reply to alice_lirey]

You can see if there are clinical trials you can apply to

kidneyhealthgateway.com/tri...

[Ziggydoodah in reply to bumblebee_tuna]

That's good advice from Bumble. Dialysis can be a pain in the backside but it hasn't been the "horror" I thought it would be. Like everything on this journey, you worry about it and then you just get on with it. It's the fear of the unknown. Welcome and wishing you all the best 😊😊

[Bubbasmom]

Good morning, My son found out at 24 which was only a few months ago. We have not gotten the results of the genetic test yet so currently they are saying hypertension. This is a journey for you guys that I will never understand but I will keep you in my prayers. I am working on him signing up for this support group, everyone has been so kind and helpful. Hopefully you will get more answers

[alice_lirey in reply to Bubbasmom]

Good day! I would gladly talk to your son! Actually I’m looking for a support group of my age just to share emotions and experience. You can share my contacts I would gladly talk to him!

[Bubbasmom]

I'm working on him.

[alice_lirey in reply to Bubbasmom]

Good luck with it! Hope everything will be good for your son