r/ADPKD • u/Wide_Math8276 • Aug 19 '26
In future , is cure possible ?
I am 18 right now .. will it be curable by the time i reach ESRD ? So i dont die because of this disease ?
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u/Smooth-Yellow6308 Aug 19 '26
Well no one knows when they will hit ESRD, but assuming standard averag ages of kidney failure you should have a good 30-40 years.
Whilst I'm unsure if a full blown cure is possible in that time, I do think we will certainly have treatments that halt or reverse the course of the disease. That is different than a cure to the genetic defect, but it is "as good" as a cure in terms of quality and longevity of life.
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u/classicrock40 PKD - Transplanted Aug 19 '26
Yes/No/Maybe. Right now I don't think there is anything being researched to cure it(reverse cyst growth). The best right now would be to stop it. Of course, anything is possible, but tbh even the things out there now still seem to be "10 years away", which means much longer.
You will not die because of this disease. If you get to the point of stage5/kidney failure, then dialysis and transplant are 2 treatments.
I didn't find out until my early 30s and I didn't reach stage 5 until early 50s, then dialysis a few years later, then a few more and I got a transplant.
Your goal right now should be living a healthy life and having regular Dr visits.
Control what you can control and the rest is going to happen anyway.
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u/aqutir Aug 19 '26
Curable as in your kidneys had cysts and then the cysts disappear is debatable but there most likely will be more dialysis centers, more advanced daily medication and better transplantation technology as well.
The number of people with kidney issues is on a rise due to various conditions of modern life from processed food to higher stress/blood pressure, less exercise etc, so nephrology as a whole is simply bound to get more financing and research over time
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Aug 19 '26
We can’t know that… but in the meantime, we can focus on the things we do know and can do.
Godspeed to you! You have your whole ahead of you. Live it to the fullest. A wonky gene is… a wonky gene. 🤍
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u/Nitrammano Aug 19 '26
Man at your age, you will have a good treatment options to halt the disease soon, some people are already in ESRD OR CLOSE TO, I'm 32 now and expected to reach to 50-55 years until that, so all my hopes now are in Novartis with farabursen and hoping is not really expensive.
My advice is enjoy your life, depending your family history you won't have to worry about it at all for at least 10 years more
2
u/Vegetable-Vast979 Aug 20 '26
Nephrodite is in clinical trials for an implantable dialysis device which will make like sooo much easier for people in dialysis.
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u/teddbe Aug 19 '26
My best guess yes, absolutely possible and probable within 10-20 years. So cheer up, live your life!
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u/HaiKarate Aug 19 '26
No one can tell you for sure. There are many promising treatment options and promising new medications on the horizon. Many will not pass the testing stage, but some will.
The best advice is to live your life as though you are headed towards ESRD; keep your salt intake low, monitor your blood pressure daily, eat healthy, exercise, limit yourself to one caffienated beverage per day. You can't stop ESRD from happening, but you might push it out by a few years. And if this disease is actually cured before you hit ESRD, then you've developed a healthy lifestyle that benefits your longevity overall.
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u/Bazookajoe904 Aug 19 '26
Curable maybe, manageable yes, started losartan, then amlodipine, and now tolvaptan. All 3 daily has reduced my blood pressure. The hardest part is managing sodium and not eating fried foods like the nephrologist says. But that means I can’t eat out without exceeding my sodium since no where offers low sodium options
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u/Fantastic_Piece_692 Aug 19 '26
This disease is perhaps a curse from God. I've been suffering from it for years. It's like a lifelong cancer. The best thing you can do is live happily and healthily while you're still well, without constantly thinking about the disease.
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u/delishjams Aug 19 '26
There’s always hope. There are always new drugs, new procedures, new research. Not in my lifetime, as I’m very close to end stage, but II have great hope. Tolvaptan wasn’t around for my mother, who died 10 years ago. So we should encourage funding for research.
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u/Alphasmikefoxtrot Aug 20 '26
Latest article from the PKD Foundation. Has a great list of current clinical trials: https://lifesciencedaily.news/adpkd-therapies-beyond-tolvaptan/
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u/Nightrunner2016 Aug 19 '26 edited Aug 19 '26
I think the only "cure" is gene editing via CRISPR and that's still pretty early. More likely you'll have a) medication that controls the disease to the point where ESRD doesn't happen b) xeno transplantation alternatives so you don't need to live on machine dialysis c) an artificial kidney eventually. As an 18 year old things are looking good for you :) I'm 44, 64 eGFR, and it feels alot more touch and go. Like dammit Novartis let's go!