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!!! 🇵🇭♥️
Hi i also have nephrotic syndrome and i want ask what steroids you are taking? My doctor gave me medicine and I checked what medicine it is and it says that it is to prevent rejection and accept the new organ as my own but i haven't had a transplants yet im freaking out please reply...... Also I hope your kidney is improving.
Are you 25yrsld Sir. Me to i'm 25 since I was 10yrsld and now I'm cured on year 2004 I finish my Elementary, Highschool, and College but when I started to work I'm relapse and and 2015 is cured and still fighting to avoid a relapse and specially the foods that prohibited to us
TJ Knight Researcher hii buddy.... r u affected by the seasonal changes like in winters there is more protein leakage while in summers the protein leakage in urine is quite less??
not so Sir. in my observation on my health I have no any seasonal changes but their are the things that we consider to avoid relapses Sir. number one is avoid unhealthy and salty, oily foods and highly preservative content products its good to consume healthy less oil, less fats, and less salty foods and second avoid heavy duty works or activies who brings us tiredness and stress. I'll observe it when I got my first job as a grocery store crew and I can't finish my trainings their because I can't resist anymore the pain in my lower back after lifting any bagagge in the store. and I'm so sorry for my grammar if you do not understand it
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
PLC Studios the cure is a vegan lifestyle. Also known as a whole food plant-based lifestyle. Dr. Greger, Dr. Barnard, Dr. Garth in the documentary film “What the Health,” speaks of the correlation between all diseases and diet.
@@jacklee-ky6wm Please don't be so inconsiderate. A vegan lifestyle helps some with kidney issues and also makes others a lot worse. It's not that simple.
@@jacklee-ky6wm as someone living with Nephrotic Syndrome, I can tell you where to stick your vegan lifestyle. Don't think vegans are immune to NS, they are not. Go push your vegan philosophy somewhere else.
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 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
1/3 of people with Membranous Glomerulonephritis go into remission within a few years, These people generally are in the lower risk group with less than 4 grams of protein spillage/day. One thing about NS, is it affects different people differently. NS is still one of the leading causes of death in the world.
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.
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!
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 !
This is wwhat I will go through later? .........I just got diagnosed. I should find out more I guess. :( Good luck to them all and all who are suffering too. God Bless u.
NaNazLiLNuBz Hello, I was diagnosed with nephrotic syndrome minimal change disease at 2.5 y.o. and was prescribed prednisone, which gave me horrible side-effects. Low sodium and low protein diet, strict schedule of sleep and Shilajit put me in remission from 7 to 21 years old. When I turned 21 I came to Canada and started living on my own forgetting that diet and sleep are important for my health. I also had a huge stress, as additional trigger and I relapsed really badly. Now it has been over 15 years that I live balancing life with this condition. It does not go away, but it is possible to manage it really well, meaning to live without symptoms. Discipline in healthy lifestyle is the key! YOU MUST AVOID SALT! THERE IS NO BUTS ABUT IT! 1 - NO JUNK FOOD, INCLUDING PIZZA! in any amount!!! 2- SLEEP should be regular (going to bed around 11 and not oversleeping), 3 - MODERATE EXERCISE DAILY, 4 - NO PROCESSED FOOD INCLUDING HARD CHEESE AND ANYTHING THAT HAS SODIUM OF MORE THAN 0.5mg per serving! YOU MUST SWITCH TO FRUITS, VEGGIES, GRAINS AND FORGET CREAMY DRESSINGS ON SALADS (USE OIL, VINEGARS, LEMON) 5 - MEAT in small amounts, if possible substitute for fish 6 - ideally NO ALCOHOL, or in very small amounts for special occasions. 7 - GET A JUICER AND DRINK AT LEAST ONE GLASS OF FRESH VEGETABLE JUICE PER DAY (CARROT+APPLE+ADDITIONAL VEGETABLE OF YOUR LIKING). 8 - Add Shilajit to your diet. Just Google it. It may sounds tough for many, but when making a choice of looking and feeling sick, taking steroids with bunch of side effects, OR GOING ON DIALYSIS, I choose all of the above and have not regrets. Good luck!
Guys try to use sambong or blumea balsamifera it is an herb..all you have to do is boil the leaves for 10 mins and drink it do it 3 times a day..believe me it is very effective..my son also has ns and he is getting better and better
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....
I was diagnosed at 4, I relapsed in 2 months. but praise god I've never relapsed again until I was 20 My suggestion to all people who diagnosed by Nephrotic Syndrome is eat tempeh everyday! it was full of protein and taste like meat! tempeh cured me! hope this thing help. Spread the words!
The thing about the steroid Prednisone is it is not like the kind that makes men have big muscles but it makes your emotions all over and you get real hungry and get moon face and weight gain in the body neck and face but not the lower arms or legs. I remember at the highest dose the doc couldn't even stand being around me and left the room. Well it wasn't just the Prednisone but lack of sleep since my new kidney wasn't working and they were putting so much fluid in me that I was on the toilet every 5 min for just a trickle (my bladder had shrunk as it does not get used if you have no kidneys).
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.
Random Videos try to use sambong or blumea balsamifera..common here in thw philippines and it is very effective..my son has a negative results of albumib right nw
I am 37 and diagnosed FSGS 1 year ago now ı realize how this ilness common in the world. I am trying to stick my diet. But ı really wonder if this goes well. I am looking forward to hear for a cure for the all People Who suffers from this
i got Nephrotic Syndrome but i can live with it only thing i notice is right now is im Always sleepy and i go to the hospital every 3 months year ago 2 every month the weird thing is that i cant really feel pain in my right arm because i Always get blood out of that arm i dont now how it is called because im not english but im 11 right now and it was diagnosed when i was 3
logan friel Hi Logan, We would love to hear more of your story and talk to you about meeting other kids your age with NS. If your mom or dad will send an email to info@nephcure.org, we can send them information. Have a great day!
I was diagnosed with Nephrotic Syndrome in 2013. My kidney function has dropped considerably now stage4. They have just started Rituximab infusion’s again.
I have this I have had it since I was 2 and I’m 17 mine aren’t as bad as a lot of people I have tiny ones to big ones and they are painful and it’s scary they said I will out grow it and never did just got out of the hospital for this two days ago I’m on 2000 mg a day of sodium it’s rough I hope I don’t get worse there is a 50 50% chance that it can get worse or stay the same it takes a lot of patience
@@animatedlife_ Read this, i think it will really help. www.inspire.com/groups/nephrotic-syndrome-and-fsgs/discussion/copper-deficiency-as-the-cause-of-ns/
@@yoyo21926 ok the treatment worked i bought the vitamin (copper, iron, zinc). I was going through replase when you mentioned me in comment, now everything is fine thank you so much!
@@animatedlife_ all the other minerals are important too such as selenium. Check out msm which is a mineral no one knows about and is probably the most important one too that heals the body, fixes food intolerences etc. Get lots of natural vit c too.
Hey guys... i have nephrotic syndrome and im not reacting to any medicine is there anything that could help me? i got diagnosed at age 10 and im a female
Pls help me also my grandson has nephrotic syndrome he is only 1yr old. When his kidney collapse my grandson crying for pain at it really hurts for me as a grandmother. My heart feel like to collapse also to see my grandson in his condition.. Hope u can help me
I jus found out I have Nephron syndrome last month I’m from Miami who should I talk to about it I’ve been to Jackson hospital but the medicine not working
Hey, I have been going to the transplant clinic since I was three. I've had two transplant and both times they were done by Dr.Burke. He is an amazing surgeon. He is very kind and experienced. I had Dr.Chandar as my peds nephrologist and she is amazing as well but she's peds. I was almost diagnosed with crohns disease but it ended up being side effects of taking Cellcept for so long. She was the only one who was able to diagnose me.I am on Myfortic now.
im 22 y.0 diagnosed NS when i was 19.. im a midwife student my college full of stress and tired, i live in indonesia.. can someone help me where u can found nephcure or something similar in indonesia? i feel lonely here, i relaps in 23 march 2017 .. and i started consume prednisolone again, moon face, hairloss, nails broke, pimple.. stressed i really need a help.. what must i do? i still want to finish my school
not much i can say, but..what has helped me : Diet, strict diet, no fat, no salt, lots of veggies, a complete shift on your diet will help..try to never miss a prednisone dose..and try to keep calm , try a safe hobby , stress affects you a lot too and can cause a flare..dont lose hope..
Yunita Achmad I was also diagnosed with NS (2003 at 25 years old) I battled for 3 years. My nephrologist gave me the prednisone and I was cured. Now I'm 39 with 2 kids. hope you get better.😊
Hi, buy food grade diatomaceous earth. mix a (non metal) 1 tea spoon a day in a cold drink. do this for a few weeks. Also add it to your bath, about a half a cup full. There is a high chance this will fix your condition. Also other things to do is buy some msm(sulfur) to make diatomaceous earth even more effective. You should also get a good multivitamin with copper
@@vondsjulie1803 stores.purecolloidal(dot) com/ get the colloidal silver to get rid of pathogens. There are alot on the market. this is the only good one.
I am 17 years old now .I have been living with it for 15 years .it started at the age of 3 .it relapses after 1 or 2 to years .I want some one to advice me what to do
Kathy Baas hey!....it is a hard battle but I think it's good to look at the good things instead of the bad thing....and make sure your son always has someone to talk to and that he knows he can talk to them and make sure to be with him as much as you can....I hope he gets better soon....make sure to smile every day!
Thank-you so much for that reply, it is hard to stay positive, but you are right, we must make the best of it, dailey. He's one of 5 children and I never dreamed of this. They were all so healthy. Again Thank you
Kathy Baas your welcome.....and I have a very low appetite too.....but i think of he wants something to give it to him and maybe he will eat....is he on syclosporine?.....i am and I also have type 1 diabetes....and again u are very welcome....and who is his newphraligest
@@samee123ud When I was 1 year old I had it this but no one in my family could find out what was going on as I was becoming weak and weak but then someone told my father about the best pedestrian and the best nephrologist in Asia, Dr.RN Shrivastava he helped alot in those days and even recommend other doctors
Hello I’ve been suffering from Nephrotic syndrome since I was 12 and I’m 20 now. I relapsed of recent and it wasn’t easy at all. I wanted to know your lifestyle in other too live with it normally
None of them actually gets completely cured, they just got there nephrotic syndrome under care, I also have FSGS since around 3 years at 22 years of age but a secondary type and I got my proteinuria under control with ACE inhibtors and astragalus! If u want to know anymore let me know
As long as your kidney are not totally totally damage you cant have the operation i think cos the person next to me also has nephro like us and she ask if she could just have transplant but the doctor said no bcos her kidney is not that totally damage but idk ask doctors
I am 21 Was diagnosed with it last year The steroids have been working so far Doctor suggested me Yoga specially for digestive system,it's called Kapaalvati And so far it's great and I am energetic. When I had the disease I used to stay 20 hours a day in bed.
Thanks for the information!!!!! My sister had also suffered from Nephrotic syndrome and she took Nephrotic syndrome care pack By Planet Ayurveda. Now she is fine We are very thankful to them.
Sir kya aab Aapki sister ki aayurvic medicine band hai ja continues hai pls reply.....maine vi nephrotic syndrome ki medicine planet se start ki hai pls suggest...........pls......
Planet aayurveda ki medicine lene ke baad mera creatinine 1.26 se 1.48 ho gaya hai (increase) body mein etching ho rahi hai . Kya aapki sister ko bhi koi problem hui thi medicine ke baad? Pls tell...
Rama Malla please us blumea balsamifera it us a type of herb..it is common here in the philippines..my son also has a neprotic syndrome..and im using that type of herb..it is very effective..we called it sambong here in the philippines
@@leandrocapili6047 kung hindi nakakaihi pwede ung sambong pero kung nakakaihi nmn depende na un sainyo kung papainumin nyo o hindi ksi pampaihi lng ung sambong
My childhood was basically ruined but through homeopathic remedies and alot of will and faith I overcame it.. The doctors could not explain it . I will be posting a video of my story because I think this disease could be fought. I am proof that it can be fought.
hey guys.. i hv a nephrotic snydrome, minimal change disease(mcd).. im confused..about the diet.. so ny1 can plz suggest me.. wat diet i shud follw..???
Hi, buy food grade diatomaceous earth. mix a (non metal) 1 tea spoon a day in a cold drink. do this for a few weeks. Also add it to your bath, about a half a cup full. There is a high chance this will fix your condition. Also other things to do is buy some msm(sulfur) to make diatomaceous earth even more effective. You should also get a good multivitamin with copper
@@Moneysinghbrarsaab After discharge they let me take steroid (omnacortil) to control my lost of protein along with pantocid...(i hope the spellings are right).
amine moussaoui Hello, I was diagnosed with nephrotic syndrome minimal change disease at 2.5 y.o. and was prescribed prednisone, which gave me horrible side-effects. Low sodium and low protein diet, strict schedule of sleep and Shilajit put me in remission from 7 to 21 years old. When I turned 21 I came to Canada and started living on my own forgetting that diet and sleep are important for my health. I also had a huge stress, as additional trigger and I relapsed really badly. Now it has been over 15 years that I live balancing life with this condition. It does not go away, but it is possible to manage it really well, meaning to live without symptoms. Discipline in healthy lifestyle is the key! YOU MUST AVOID SALT! THERE IS NO BUTS ABUT IT! 1 - NO JUNK FOOD, INCLUDING PIZZA! in any amount!!! 2- SLEEP should be regular (going to bed around 11 and not oversleeping), 3 - MODERATE EXERCISE DAILY, 4 - NO PROCESSED FOOD INCLUDING HARD CHEESE AND ANYTHING THAT HAS SODIUM OF MORE THAN 0.5mg per serving! YOU MUST SWITCH TO FRUITS, VEGGIES, GRAINS AND FORGET CREAMY DRESSINGS ON SALADS (USE OIL, VINEGARS, LEMON) 5 - MEAT in small amounts, if possible substitute for fish 6 - ideally NO ALCOHOL, or in very small amounts for special occasions. 7 - GET A JUICER AND DRINK AT LEAST ONE GLASS OF FRESH VEGETABLE JUICE PER DAY (CARROT+APPLE+ADDITIONAL VEGETABLE OF YOUR LIKING). 8 - Add Shilajit to your diet. Just Google it. It may sounds tough for many, but when making a choice of looking and feeling sick, taking steroids with bunch of side effects, OR GOING ON DIALYSIS, I choose all of the above and have not regrets. Good luck!
In my childhood my doctor used to say, this disease goes away automatically when you grow up, but this is all myths, and going to hospital is never nice, my parents are only my strength 😊
@@Divchyk r u cure without any type of medicine... im also NS patient last three year.. no doubt u r right its all about to change completely ypur life style
@@shahhayderzaidi4445 im the same guy, still have it, but No protein is Ib my urine for now, im taking something for high blood pressure to help it? No idea ahhaha
