Dr. Reiser Describing a Cause of FSGS Discovery
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- Опубликовано: 24 авг 2024
- Dr. Jochen Reiser of the University of Miami's Miller School of Medicine describes what his findings from the cause of FSGS means to patients and the research community. The NephCure Foundation has helped Dr. Reiser with his research in the past. Please note: Nephcure isn't endorsing this work in any way other than to provide it as information to the viewer.
That will kill us. That is its nature. I have had 2 transplants and I am on dialysis again for the third time. I have been on dialysis for 16 years this time round. My full potential has never been realised because of this disease. Not so much for myself now but for future patients and children especially who are recently diagnosed; please, please I beg you strive to find a cure to this awful disease and please put a stop to it destroying more lives!
I have suffered from FSGS for 31 years. It is slowly and painfully killing me. My husband has the same disease too and it will be our hearts that eventually give out on us , the disease itself
People say if you have a kidney disease its ok you can have a transplant , but they don't realise that fsgs comes back. Just like a bloody boomerang! ! Again and again and again.
Thanks
Transcription correction : 0,35 0,37 focal segmental glomerulonephritis 2,07 podocytes
I am 32 with Fsgs. I have an identical twin that doesn't have it. We are working with several doctors (including Dr Reiser) and doing research to try and find a cure. If any doctors out there need the perfect experiment guinea pigs, we would love to help! Contact us!
Thank you so much for sharing. My brother has fsgs (he is 23) and I do not. I am very inspired by Dr Reiser's work. Please keep me in the loop about your guys' efforts and how my brother and I can help
Amanjot Kaur how is your brother doing?
My best friend just passed away from this disease. He had it for 30 years. Once it was time for him to receive dialysis, he let it take it course and without treatment. He lasted around 7 months. I miss him so much.
What is the term he is using, soluable upar?
I had two kidney transplants and I know what you talking about! 24 years old guy with FSGS :(
Are you still ok now?
I was diagnosed with fsgs when I was 13, they began with high doses of prednisone, and after a few months switched to cyclosporine for 5 years. The cyclosporine is crazy expensive, but it worked. I have been without symptoms or protein leakage for over 14 years. One thing I have always experienced though is that I am always so tired. My doctor says if I'm not spilling proteins and my blood work/urinalysis is good then it shouldn't be related. But I was wondering if anyone else has found the same thing. People often ask me why I'm so tired all the time, and tease me about being an old man. Does anyone else that has recovered from fsgs experienced this?
Yes. I recovered. The reason you feel like that is bc of the drugs. Not the disease really. God bless I hope u get over it like I did
my son was diagnoised at age 4 and was on cyclosporine until he was 14 when it stopped working only time he started spilling in those 10 years was when he grew and needed a higher dose well when it quit working it took almost 2 years to get him back in remission but now is on 3 differnt medicines vs just the cyclosporine but he IS tired all the time He gets worn out so fast doing anything he has not went to school with the kids since 3rd grade and is now in 10th grade and everytime a kiddo came to school with a cold -sore throat- runny nose - flu or what ever GUESS WHO GOT IT !! and was out of school for a bit sick so the doctor and We decided DONE and the school had teachers just come to the house 4 days a week and he did school Now with the pandemic hit all the kids went to online or distant learning which for some reason they could never figure this out when we asked about it for our son the wahla pandemic and wow there is a way to have him involved in the classes which has NOW made it very hard as he has learned a completely differnt way !! I know this is more then you asked for but as you see he has NO reason to be tired all the time he stays at home 24/7 on occastion he gets to go to a store or his grandparents home and of coarse his Doctor appts. and to have labs done. The Neph. Doctor has said more then one time he is the healthiest sick kid they have !!! and I didnt know it was the cyclosporine or that he was not around other sick kids at school or both. he is not so called cured as he has FSGS type but is off the cyclosporine and also had while on it and still does have no energy and tired all the time for a almost 16 year old kid. oh also about 3 months ago they did a 2nd biopsy and at age 4 he had 5% scarring damage and 10 years later even after 2 years out of remission and spillng crazy he only had 5% more scarring damageThe Neph. doctors were AMAZED !! they thought for sure he would be up in the 50 to 60% scarring damage !! if ypu have anymore questions please feel free to get ahold of me.
My son is 2 years old diagnosed with secondary fsgs and the genetics test show to be congenital gene mutation. Now in low dose of Prednisone, analabrin, tacrolimus, levathyroxine drugs. Albumin is low low proteinuria and low calcium levels.advice me how manage the disease so one day my baby can outgrow this condition.
How you recovered??@@luisalfonzoguzmanlegreaux467
Dear sir, can I use steam sweating bath to overcome FSGS KIDNEY DISEASE... please reply
There is no sound!