Love u guys, keep up the fight for us

535 Smitham Spring

How r u?-so useful video-work-Pkdfoundation!))

Dr. Patel is wrong. The gene defect does not determine outcome! PKD disease is primarily metabolic with a genetic component. Bradford Hill criteria confirms in PKD that the gene and disease are distinct, and why some positive PKD cases have symptoms and some don't, and why progression within families can be wildly different, and why the ADPKD gene can skip a generation then reappear with the same polymorphism, and likely the reason behind the spontaneous generation of the mutation itself. The metabolic component also explains why diabetes, obesity, and insulin resistance are the primary risk factors. Basic misunderstanding such as this is why most PKD patients don't improve! I personally reverse my PKD and know of many others.

New treatment cure 2030 reply please

Treatment

As soon as possible, may a definitive treatment for this disease be found by next year... Please make your efforts so that we can have hope.

Thank you for sharing your studies. Most appreciated.

Thank you for sharing the research. Next time please make an audio check before recording.

Hello My Dad egfr 24.8 and creatinine 2.9 Is there anyway to make improvements

thank you for sharing

Great tips, thank you for sharing.

I would tend to get night sweats on the toilet seed , I’d share I can understand I feel like I’m going to pass out because I have the difficult time to release my own fecise out of my stool 😢🥹 YEAH ITS NEVER A GOOD TIME

I’ve been diagnosed with pkd at the age of 15 & when I turned in my early 20s I felt a knot on my lower back(( on my left side with there’s tons of discomfort & I have to sleep on my side

هر چه زودتر درمان این بیماری پیدا شود، بهتر است.

First haha. I am here cuz i have pkd. Only 24 and i have 1 kidney and half a pancreas, and no money for health care! If youre reading this just know that this country is failing and killing people like me. The government has the money to give health care or insurance for people like us, but doesnt and we have to die because we cant afford treatment. Please get me out of the US!!!! I WANT TO LIVE

I'm younger than 12 and have pkd

Straws cause air bubbles in your stomach and really aren’t good for you <33

nah my tips are 1. be sick 2. wake up from a nap or sleep with a dry throat

Thanks I need thsi

For me when in ketosis for extended periods of time, I have to increase my salt intake to keep my blood pressure high enough to prevent dizziness. If not in ketosis then limiting salt is a must. It’s easier and feels better to just stay on keto diet. It improved my EGFR. For me my abdomen looked slim while in ketosis. When I stopped keto I can tell my kidney enlarged because, it’s difficult to sleep on a large lump. I have one kidney ADPKD. I lost the other to multi-cystic at 6 weeks old. ( those details are just what I was told by my parents). I have never had potassium issues. And it may be that keto is almost no salt and that may be why I have to add it when on keto. I was on keto for 6 years and fell out after a Cipro Injury and am ack on keto. Life is more than food. On keto and never had high cholesterol, LDL etc. I exercise one hour every morning. BMI is 20.

Thank you for sharing. ❤

What exactly is a safe Keto diet that's ADPKD specific? Just asking, because I'd always thought bananas were "good for me," however, people like myself with ADPKD shouldn't eat bananas, and a lot of other things that are good for most people, but again not for ADPKD patients. Please give more information regarding what a good Keto diet consists of. Thanks a million!!!

Great video, would love to see more!!! You could get more fans with S M Z E U S!

👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼

Are the slides available somewhere?

I was diagnosed last week with PKD I just had an ultrasound and the radiologist saw that one kidney was covered in cysts and had stopped function. The symptoms I had were I was fatigued and bloated. My skin had been itching for years but this was put down to allergies by my GP. I wasn't given any advise just told to wait for a specialist which could take months 😢

I was eGFR 54 and falling fast. Eating very low carb clean keto diet, IF, and KetoCitra reversed the decline and improved all symptoms. My recent 18-month MRI sequence showed my largest kidney TKV shrank by 24%. Don't give up hope. There are options!

Good info. Thank you all. Very helpful guidence. I also have polycystic liver disease as well.

I was diagnosed with ADPKD/PLD 28 years ago and 28 years of age, at the time there wasn't much education about dieting or the disease in general. As a result, I developed my own "clinical trial" to see how I could better manage the ever expanding mid-section of my body. Fast-forward to today, I went from 256 lbs. to 175 lbs. and have remained steady. This is what I have done: 1) I limited red meat to literally once a month if I feel like eating something otherwise I won't even eat it. 2) I eat chicken, some sliced turkey for sandwiches, seafood and plant based proteins. 3) I drink copious amount of water, you will never see me without a bottle of water in hand. 4) I eat breakfast, snacks during the day and lunch at around 2:00 pm - 3:00 pm. I do not eat anything at all past 6:00 pm. My snacks consist of pop-corn, nuts, and some fruits. 5) I exercise five days a week leaving two for resting. Results: My weight has remained steady at 175 lbs. and sometimes less, my waist size went from 38 to 31-32 and I feel as healthy and full of energy as I did when I was in my teens. I have had no kidney (cyst) pain or bleeding in over 10 years and no UTI's or complications. I should mention that I had a successful cadaveric kidney transplant 16 1/2 years ago and my lab work (done two weeks ago) all came out within normal limits. And kidney function (creatinine) is still at 1.2 same as it was after the transplant and GFR at >70. My take is that changing my eating menu (I don't call it diet) along with exercise and being my own advocate has played a major role in my health today. Thank you to the entire team a the PKD foundation for this very informative session.

It's great to see the ketogenic diet picking up steam even with more conservative organizations. We've been seeing such great results with our version for PKD patients over the years, no issues with cholesterol or stones - quite to the contrary - so thank you for including it in this video.

Great talk and speaker. Thank you.

Interesting discussion, but it's a shame to see such high-level experts give such poor advice. Keto flu is entirely preventable by changing more slowly. Quick diet changes of any type can cause a reaction. It shows your poor understanding. Keto and kidney stones. Most kidney stones are calcium oxalate. They form initially as crystals (which damage the tubules) in a concentrated acidic urine solution (which should be avoided). Oxalate (and uric acid) kidney stones can and should be prevented by avoiding high oxalate foods such as spinach and almonds, staying well hydrated, and keeping a neutral urine pH. You correctly mentioned the danger of high uric acid, but then you recommend eating lots of fruit. If you followed the research of Dr. Richard Johnson, you'd know that high uric acid is mostly caused by metabolic syndrome, insulin resistance, high fructose, and alcohol which affects the liver and leads to high uric acid. You recommend the DASH diet, but don't mention the trial that demonstrated the ketogenic diet to be superior to DASH (which will only lead to kidney failure) What do I know? I know I followed the standard of care and ended up with heart failure and impending kidney failure eGFR 54. Knowing that obesity and diabetes are risk factors for PKD, I rejected tradition, in favor of low glycemic, very low carb, moderate animal protein, high animal fat (no PUFAS), IF, low oxalate, super hydration, KetoCitra, and some minor other things. In 4 years my eGFR has gone from 54 up to 84 now, and in the last 18-month MRI cycle, my largest kidney TKV shrank 24%. I now have no PKD-related symptoms (no pain, GERD, HBP) and my heart is 100% normal. No wonder few people can stay on your diet. Why should they when you admit it doesn't work! The same old things don't work. Maybe you could learn from me and give people real hope. I'll gladly speak with any of you if you want to learn a better way. cheers

Keto diets seem to benefit PKD and Alzheimer's. I wonder if TREM-2 is related.

My PKD belly feels like it’s killing me. I feel short of breath all the time and it’s hindering my quality of life.

Thank you. Excellent lecture. I'm an N=1 case study. I significantly reversed my PKD, eGFR from 54 up to 84, and TKV improved 15% in 18 months per MRI eating a healthy ketogenic diet, IF, low oxalate, hydration, and KetoCitra. I wrote in detain about how and give it free to all who ask.

My daughter is 14 years old and was just dignosed with ARPKD. Our doctor is amazing and explained everything but this video helped me alot as well. I have alot of learning to do.

Two great messages. Thank you all.

How does one center become a PKD center of excellence. I live in Trinidad in the Caribbean

prevention of sugar and salt plus healthy diet also restricted diet prevent fatigue also curcumin 3 times daily plus cardamon stop progress of the disease

I just watched your presentation about beginning dialysis and which type to consider. I am 73 yrs old and very recently told I have diabetes and 5 weeks ago diagnosed with stage 4 kidney. The beginning of July my GFR was 24 and 6 weeks later in the hospital it dropped to 22. Now in November my GFR last blood test my 34. Been told I need to resolve my thinking to dialysis in the future. YOUR PRESENTATION AND HEARING FROM 2 PATIENTS GAVE ME ENCOURAGEMENT AND THINGS TO THINK ABOUT. AGAIN, THANK YOU VERY MUCH!! Ray Truesdell Dallas, TX

I need help on what to eat, ive been told recently I have cysts own my kidneys, to many to count and as big as 38mm 1/3 of my right kidney, my mom died of PKD and my sister has it too, I was cleared in my teens but now I have cysts and its suggestive of PKD, ive done some research and found out about the role of glucose and cyst growth mainly triggered by insulin, but there us another pathway I researched and that mTOR now this can be triggered by either IGF1 or amino acids, I also learned that those that eat carbohydrates regularly tend to have chronic high levels of mTOR via IGF1 and high insulin, yet mTOR triggered by amino acids is usually short lived 2/3 hrs depending on source, im lean ive always exercised and always used carbs to do so, ive gone to a keto style now which is a struggle, but I have a daughter to think about and there is no way im not walking her down the aisle one day in the distant future, do I have to cut out meat? I can do veg but most nuts don't agree with my (red blotches on my face) how do I eat, feel full and have energy to still live my life until hopefully I reverse the size and amount of cysts, thank you for any help, as you can probably tell this has hit me pretty hard, many thanks GOD bless

When will treatment come for adpkd , I also have adpkd from last 12 years

Please can any of you let me know which foreign organizations provide free medical care for me and my son. We are ADPKD patients.I want to know if the organizations provide free treatment to anyone outside their country and how?