"The Adult Journey" - NephCure Kidney International - Nephrotic Syndrome
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- Опубликовано: 30 ноя 2024
- For some, Nephrotic Syndrome is not just an illness--it becomes a way of life. Watch this video on the Adult Journey with Nephrotic Syndrome and learn firsthand how this disease has affected people who live with it every day.
'Navigate your life based on limitations'. Yes! can relate to that. Been on treatment for NS for 18 years now. First diagnosed at age 5 and I am 22 now. still on prednisolone ( steroid dependant NS). Never had enjoyed my childhood or teenage as others at those age would do. Everything and anything has always been limited for me.
Thank god all these years without dylasis I know how is hard being a teenager with it
I can relate
I got digonesed since 1 year only
My reaction was
What is this disease
Now I dealing with it
I just found out my two year old son has this nephrotic syndrome I was confused and sad and he's throwing tantrums I was wondering what I did where I went wrong but then I came to his video and it helped me alot thanks so much for this video may God protect and bless us all from Trinidad and Tobago 🇹🇹❤🙏
that feeling that your skin is going to burst open is so true! You feel like you’re going to literally explode!
Well done, very informative and inspirational. My dad just got diagnosed with nephrotic syndrome complicated with acute kidney failure requiring dialysis. He is getting a kidney biopsy tomorrow. and prognosis/course/dialysis length are unknown which worries us deeply. Thank you for all patients who shared their experiences, because you inspired us to fight and show us we are not alone. If there is a support group for nephrotic syndrome patients, I would like to be part of. =)
Well done video, worth the 11 minutes. Good job NephCure!
Thank you for this great video. It feels like I'm no alone.
Good job on this video. I'm one of the fortunate ones. I'm at 12 years since symptoms showed/11 years since diagnosis and I fortunately haven't had it as bad as the people in this video, but I know the longer I have it, the likelier that my time for steroids and dialysis is coming.
She inspired me
She had 3 kidneys transplants and she choose to be happy Cuz it's easier
Really like ghandi said
Real fighter never angry
And keep going wish you all long remission
I have mcd
1st year
Hopefully the last
My four-year-old son has ESRD because of FSGS and Nephrotic Syndrome. He probably doesn't know what it's like to feel well, but it really puts it into perspective to hear adults talk about it. I hate this disease so much.
Me too
I suffer from nephritic syndrome. where stigmatization is killing me. am from Nigeria a country side where accessing healthcare is difficult. money for treatment is not they.started when I was 3years it's been on for 20years now.without much encouragement and the environment.am still keeping on strong. to you out thry . you are not the worst. be happy
Actually what i will be sharing now ,many of you not believe but my NS was completely cured after I started working out with cardio i ran and ran everyday and ate healthy and i kept close eye on my excretory functions and i think because of that it is gone from my life and i insist that all of you try this eat healthy keep your weight always in control ,if blood flows in your system nothing can hurt you ,we all know the that this medical industry is ruthless and most of us are sick because of them they can never treat you because we are a hen who lays golden egg for them ,if you can believe me than do the part of running and eating healthy you won’t see any sign of disease.
Can you share your diet plan
I got neprotic syndrome when i was 18 now I'm 23 I'm suffering from almost 6 years
Medicines doesn't cure you?
I have had nephrotic syndrome for 30 years (1991). Cyclosporine and Acthar HP Gel injections work for me but remission does not last if the medication is stopped.
I hope that nephcure is checking there post/uploads for comments as l would love a response to myne.. in addition 3 lives effected by this disease and what looks like 3 outcomes 2 being not so great . As far as Christina’s case went is she still in remission ? , and seeing Brad was already 10 years into it l am guessing here but l would say is he still in the same boat . Iam just over 2 months into treatment and l thank the Lord that we can be helped with drugs like prednisolone , but the side effects are many and not so nice ..
Yes same here I'm in remission since December and cyclosporine worked like magic 4 me
I was just curious as to how everyone is going ? I contracted/was diagnosed with nephrotic syndrome 2 months ago . I am 49 and going down the path these people have already travelled any information or even suggestions would be much appreciated. I would also be interested in the trial that helped . Is the lady still in remission, ?
My son marquise had NS at the age of 14 he past at the age of 20 he developed a blood clot. His doctor never once recommended blood thinner, right now I'm puzzled ,reading about NS now I realize a person who have NS should be taking some kind of blood thinner medication, I don't know if it's my flout or the the doctor I'm confused...
I hope you can help my daughter she has suffering from nephrotic syndrome shes only 2years old when the doctor found out ..shes now 4 going to 5 years old on October 2021 shes still taking prednisone but nothing happens , my daughter is now sleeping in pain 😭 hope one of you will help her. Im from phillipines
May be she is steroid resistant or dosage is low. In my case I had use methylprednisolone and deflazacort which has less side effects
I was suffering from this condition.. reall worried i was about my family and children then.. i tried planet ayurveda products.. and it worked.. my reports are coming in normal range thanks to them.
Sir kya aab apki medicine planet se continue hai ja band ho gayi hai maine vi planet se treatment start kiya hai but mera creatinine levels increase ho raha ha kya apko vi koi problem hui thi medicine lene ke baad pls tell me....pls guide me....pls...
Sir aap apna contact number de do mujhe aapse baat karni hai pls....
Nonsense don't belive
🙏🏽🙏🏽
I suspect I have this 🥺🥲
me too what is your symptoms?
@@EPICFAILSARMY4feet swelling for years now, protein in the urine every time I check… also the weight gain and yourself