Lean On Me - Living with Nephrotic Syndrome

25 years, still fighting it.. is hard.. i wish more people knew about this.

I just recently got diagnosed with nephrotic syndrome and I feel devastated because I can't believe it was happening to me. There's a lot of questions going thru my head, but I just thank God for still giving me a chance to live. And now I'm on my maintenance, hopefully when I get back to the hospital on June there'll be progress in my kidney. Nothing is impossible to God! Let's just keep the faith in Him. 🙏😇 All love from the Philippines!!! 🇵🇭♥️

My daughter was born with Nephrotic Syndrome, after endless operations and dialysis (four times a week) she will be transplanted on 22nd sept 2014 at BCH in the UK. A lot of people have no idea how serious and aggressive this horrible disease is, every day is a battle for my little girl as is all the Nephrotic people ! KEEP FIGHTING & NEVER GIVE UP !

I'm a med student. I came here to see how the patients live with this kind of disease. There is no clear treatments written down in my med books. It's devastating. I hope we'll eventually find an efficient cure for this disease. We need to keep the faith

I’ve been looking for a while and I found people who share this with me! Finally you know what it’s like

Hi I'm 15 years old and i was diagnosed when i was 2 years old and doctors said I would grow out of it and I finally did I am so happy

Chronic illness and all the grief and pain it causes forms some pretty amazing people. They show the rest of us how to live.

I had this for a little while, it was HORRIBLE. No one except the people who take that terrible medicine know that you can't even function while taking it. I remember sitting in a hospital room looking at a fire alarm and seeing that it was red. Well that pissed me right off. Why not make it orange?! Or Green?! Why choose red?! That is the kind of thing you get ticked off about while on that stuff. You go into depression, insecurity, and want to die Luckily for me, I have been in remission now for a couple years. I can thank my Christian friends for being so loving and caring towards me. I used to constantly be mad at God and now have a relationship with Him and with my savior, Jesus. I have have seen miracles happen and I am loving life. To anyone currently with this terrible disease, it DOES get better. I know it seems like it seems so hopeless, but as long as you are alive, there is hope.

Thank you for this video. It's been a hard 2 years with my son being diagnosed with this. It's a challenge everyday but with God anything is possible.

Diagnosed with minimal change ! Thank God i got it under control to 1 prednisone daily its been two and half years now and couldn't be much thankful ! Its just a fight everyday Just don't give up !

Thank you. My son was just diagnosed with Nephrotic syndrome and this video help a lot to prepare for. We going to win this fight.

I have nephrotic syndrome and I was extremely lucky to take some medicine that helped me so much! And yes sometimes if I eat to much/have a lot of salt, I don’t feel good! But I’m on the recovery road!

Loved this video =) I keep forgetting to finish my patient story on the webpage.

I have nephrotic syndrome and it's so expensive to deal with since it's not even curable . Currently my hair is falling and it's so depressing

I was diagnosed with Chronic Glomerulonephritis Nephrotic Syndrome when I was nine. The doctors said that there was no cure and I was probably not going to be able to live a normal life. After a lot of trial and error I discovered that a vegan diet nearly cured me. I have not been on medication since my diagnosis, I do get sick more often that the average person and do have proteinuria but not nearly as much as other people who have this disease, I have also not ever been put on Dialysis. So much is still unknown about this disease so I can't tell you why this works for me but it seems that animal protein causes irreversible damage to my kidneys. This idea to follow a vegan diet came from the book The China Study by T.Colin Campbell, I highly, highly recommend you read this with an open mind especially if you have nephrotic syndrome. Best of luck

We need to hear these stories of pain and suffering in medical books,not just Bs theory., As a Med student,we need to know,what it is really we are learning....

God bless you all

Hope they find a cure :( for this illness.

It is more common in males and i am female, I was 7 when I was diagnosed and during the first hospital stay i contracted peritonitis, I was steroid dependent for 3 years before my specialist put me on cyclophrostamide which is a type of chemo, i relapsed 10 months later and now i am steroid dependent, i am now 12 years old and i relapsed 3 days ago :(, this is my 13th relapse in 2 years and before the chemo i had relapsed 19 times. I had to give up all of my sports and i put on over 30kg. It's been really hard on me and being in the hospital all the time does ruin my life.

I was diagnosed when i was 10 and 5 years later im on a one year trial without steroids and i still have to check meh urine now and then