IgA Nephropathy patients

[@Phasmm_]

Just diagnosed with this. I’m at about 50% and I’m only 18.. genuinely such a shock as it came out of nowhere. I was able to get out of the hospital with only a biopsy, but it’s still so new to me. They have me now on steroids and potassium supplements but god the water weight I’m retaining is unbearable.

[@megamaximpie]

I was diagnosed with lga about 4 years ago. Been stable ever since around 50%. So its important to not worry too much if you dont have to have dialisis. Enoy the present, eat a low salt diet and well see what happens in the future.

[@zakme5638]

Gluten was associated with that disease, kzbin.info/www/bejne/d3LPYZ2ipZZ-m8U

[@osteopathichomeopathicking6154]

Don't let them take your kidneys from you. It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@oNanemo]

Honestly I'm on dialysis and it's not the end of the world either. Sure I would rather do without, but humans adapt to things pretty easily, and as long as you're alive you can enjoy life. I'm going to a trip to Paris next week, first trip since the dialysis started, I'm curious to see how it goes!

[@avitusxenoi4378]

Grateful for these stories, my wife was diagnosed recently. Just trying to educate myself and be prepared to offer any support I can.

[@donnasimpson8703]

Thank you all for sharing your story. My husband has just been diagnosed. He had a sudden onset of symptoms. Headache, vomiting, general unwellness. We are coming to terms with this and are struggling to comprehend. This has been both reassuring and informative.🌻

[@donnasimpson8703]

@@iqrahaider2076 it has been a little over 12 months. It is actually a miracle his Nephrologist has said. He is off all medications foe 10 weeks now and fingers crossed 🤞 no relapse. Dr said he has never seen someone reverse symproms like this. Thank you for asking. 🌻😊

[@Liketheconvention]

Thank you so much for sharing this. It's great to hear other people's stories about this disease.

[@mahiyau4]

Jeneva Sanchez share your story please

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@martincook4792]

Interesting that all those interviewed were diagnosed in last 5-10 years. I was diagnosed over 20 years ago at 50% Gfr and now down to 12%. Feeling tired, very itchy and loss appetite some days. I am not yet on dialysis

[@HealthRecovery]

change your diet asap

[@misslaylay2006]

I’m having the same symptoms. It sucks. I need to call my Nephrologist

[@bigwildcat2020]

Good job, you have managed pretty well

[@johnmarcohidalgo1034]

My gfr is 50% last December, but this month my gfr is 59.8.

[@martincook4792]

@@madamebovary5593 yes very frothy caused by the high protein in the urine

[@Ruth0Ruth0]

I have just been diagnosed with IgA nephropathy. I am 29 year old new mum and have always been in good health, so this came as a shock. Thank you for this video.

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@yousofkhan5034]

Can we get married with the disease diagnosed before marriage?

[@RiyaRiya-th6ig]

@@yousofkhan5034 yes you can.have normal pregnancy... And a meaningful relationship

[@oNanemo]

I'm sorry to hear about this, I think this is the case for most of us, as this disease attacks young people and that there's not a lot of symptoms. You think you're very healthy and all of a sudden you learn you're not at all (depends at what stage you're diagnosed of course), it's really a shock...

[@spogmayinayat9280]

I'm 23 I was diagnosed 8 years ago although my blood pressure and all tests are normal but I'm having protein and blood in my urine From 2014.This video helped me alot thanks for sharing ❤️

[@mrbucanon2339]

I’m 14 I’m going for a biopsy they think I have iga nephrothy once I get my results I will say what it is

[@zakme5638]

Don't give up on yourself pal,there's hope for healing, here's a story of one recovered ,may his story answer some questions kzbin.info/www/bejne/d3LPYZ2ipZZ-m8U

[@jhuniorichon9716]

How are you now? My nephro said that I might have this but was too early to have kidney biopsy yet

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@theanonymous5822]

I'm 23 now i diagnosed 2 weeks ago iga nephropathy

[@evelynaustria5227]

I’m glad to have found this channel. I’m an IGA NEPHROPATHY patient, too, stage 3B CKD patient. And still confused on what kind of medications to take. Some kidney supplements work on me, but they have side effects like I get constipated and became skinny. I hope I can find one that suits for me.

[@shihabudheenpalliyalithodi4447]

iam a IGA nephropathy patient. diagnosed on 2014 . stable function. no steroids taken

[@shubhipuri5239]

How??

[@kanchanyadav1468]

How

[@kanchanyadav1468]

I m in steroid from 3 years

[@tilakchowdhury2138]

@kanchan yadav kaise ho?

[@nashrock2181]

Hi how are you now i also diagnosed with IgAN recently

[@misslaylay2006]

I’m 31 African American and was diagnosed with IgA Nephropathy of Dec 2017. The last time I checked, I only have 50% kidney function. I was on steroids for six months and I had a hard time with the steroids. I had so many of the side effects. Mood swings, depression, acne, developed a bone condition, and other things. Now my protein level is going back up. It’s been hard having this condition

[@ayephyunyein3459]

I’m 28 and I was diagnosed with IgA Nephropathy of Jun 2018.The first time I checked,45% kidney function. But the last time I checked,I only have 35%😟 even though I was on steroids. It’s really hard time for me .

[@cengethan2481]

@@ayephyunyein3459 Bless U

[@janjan6661]

Get off the steroids

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@rachelhelton3598]

I started go had a kidney problem at the age of 9. Its took them 3-4 years to find my diagnosis, Iga nephropathy. They think it was caused by my premature birth, I was 3 lbs when I was born. Currently, my kidneys are not inflamed and I've been living my best life of a teenager.

[@renatayanuzo4779]

hi sorry to bother you, I'm a teenager too and I have just been diagnosed with Iga nephropathy. I just wanted to ask you how do u manage your diet and if is a hard thing to do because everything is new to me

[@hyperviper6124]

@@renatayanuzo4779 its hard, basically no tomatoes, potatoes based products basically eat salads even in cold weather, its sucks and really the only cure is the transplant, I'm lucky here in Australia where our gov will pay most of it, life is so much better after it just need to watch how much tomatoes and potato based products you eat as the potassium could damage the new kidney, one day there will be a cure just covid put a halt on most research

[@RiyaRiya-th6ig]

@@renatayanuzo4779 how are you now???

[@renatayanuzo4779]

@@RiyaRiya-th6ig Hi! My doctors found out later that I actually had Lupus Nephritis. Since then, I have had a low-sodium diet and controlled the number of proteins I eat. It has been a year and a half, so I'm pretty used to it. If anyone is reading this, is going to take a while to adjust to this big change, but you can do it. In the end, you get used to it and start living in the moment. (PD: please forgive me if I wrote something wrong, I'm not an English native speaker)

[@minhabasheer6748]

I am just 19 year old girl from india with iga nephropathy, diagnosed iga in 1 month, I have 3.5gm proteuria and normal rft

[@fitriyahzakaria]

I am 26 y/o this year, diagnosed 2 years ago and had been on BP medications and ACE-inhibitors. Just started my prednisolone medications 1 week ago and hoping all goes well and my proteinuria will reduce significantly after this 6 months steroid therapy. Finding hope in this channel and knowing more on what can I do to prolong my kidney lifespan and not let it affect my lifestyle and work.

[@theanonymous5822]

What are you doing now bro?

[@AmyChen-py3jj]

Did you gain weigh with the prednisone? Did you have flank pain ?

[@annetteweston6954]

very helpful..... my daughter 27 was diagnosed 3 days ago , didnt have any symptons doctor thought she wanted to get pregnant so did all the tests and then biopsy and found berger disease .

[@osteopathichomeopathicking6154]

Don't let them take her kidneys from her. It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@thomashall2753]

I feel like there must be some way to figure out what is needed to stop the disease in its tracks, and then we all come together and give what we can to raise awareness and funding and make that happen!

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@shorelinefilms9661]

This is great

[@chrism7249]

I recently found out I had this condition, I found out I had CKD stage 5 (GFR 6%) last August and was told it was caused by hypertension over many years. Recently I entered a study at our local dialysis unit and was told my CKD was actually caused by IGA Nephropathy which has now caused an issue in the run up to a transplant from my sister who is now being tested to make sure she doesn't carry the same gene

[@chemical93girl]

This is so interesting, thank you so much. I just got diagnosed, really appreciate it x

[@exordra]

Me too it’s kind of scary I got diagnosed beginning of January

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@WB-zr7pq]

I have had IGA since 1998, im still trying to keep dialysis at bay. Looking at new clinical stuff coming out and hoping for any real kidney advancements. If I get a virus like a flu my body tries to shut down, other than that i live and eat extremely healthy.

[@marcuskinsella1740]

I think in 20 years they will have a implantable artificial kidney or some type of regenrative medicine😊

[@oNanemo]

Thank you for this video! I just got diagnosed with this and it's great to hear about other people's stories about it. Pretty shocked to hear how long some people took to get a diagnostic though, for me it took 5 days between my regular check up blood tests which showed something was wrong with my kidneys, to get the biopsy results. I'm lucky I can get treatment right away now :)

[@nawangsherpa3209]

How is it working for you now?I just went thru biopsy and possibly I may have same desease.

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@jaharodencadingilan3647]

Did you experience a back pain ?

[@abhinandanpedhavi8329]

@@jaharodencadingilan3647 i experienced back pain 2 yrs back. Showed to doctor and he said I had slipdisk but last month i got diagnosed with IGA....

[@abhinandanpedhavi8329]

@Nanemo Snow, what was your creatinine level and what is your situaition now...???

[@Keep-HODL]

great to hear other people's stories and opinions i was diagnosed 9 years ago after got tonsil and seen urine color is different and conform with biopsy. i took two years steriods . now i am with blood pressure medication and 400mg fish oil capsule.

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@richardjanasen4238]

I have iga as well my kidney function is good i was diagnosed with it in 2005 had the kidney biopsy right now I'm just being monitored as my doctor put it I'm not on dialysis yet

[@YHari-xc6bv]

9014766163

[@YHari-xc6bv]

Call me

[@DebankurDas-bc8wx]

@@madamebovary5593 same foamy urine problem ...Did you check?

[@DebankurDas-bc8wx]

@@madamebovary5593 i goggle it but ,i don't understand what it actually is ?

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that. Another source; pubmed.ncbi.nlm.nih.gov/?term=IgA+nephropathy++gluten

[@DharmendraSingh-iz5hm]

Please create a telegram group for IGA nephropathy patients

[@VIKASHSINGH-bz6dt]

Plz give link

[@jjjj1352]

Love watching these stories!

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@mahiyau4]

I was diagnosed in 2016.. still kicking with the diet. Not yet on dialysis,Hoping to starching as long as i can

[@dadz5899]

Hi ,need help on the iga please.as I'm diagnosed too.need support.

[@hemantbudhathoki6554]

Could you please share your diet.

[@ankitjayaswal4691]

Diet ?

[@ganeshm7718]

Why no one shared their diet ? Pls someone share it help

[@arvinghevondian8484]

Thank you for sharing your story

[@vishnuraja.s5566]

What are the best diet for iga?

[@annuhlisa]

Ah. I was diagnosed as a child with this and it’s came back pretty bad the last few months- and October 7th happens to be my birthday😂I feel I can’t escape from this disease

[@zhengguo9839]

Hey, I just want to say don't give up, I was diagnosed with IGA yesterday. Everything will get better gradually, won't it?

[@gamingwithfriends8279]

@@zhengguo9839 can u tell me what are all procedure my frd is iga nephropathy plz plz whatsapp- [phone]

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that.

[@JessOpinaporquepuede]

I like to hear other people with this disease, because I feel very alone, no body understand you

[@ganeshm7718]

Continuesly dialysis?

[@Bhatia423]

My son was diagnosed in 2008 when he was eight. He is in stage four now. Iam so scared

[@zachk6794]

Have you tried working with a kidney dietician?

[@Bhatia423]

Zach K , yes... we have an appointment with one. My son was dx when he was eight. Thank god he is taking this serious now. Too bad it took stage for for him to see this is no game

[@zachk6794]

Stardust good to hear! Yes I was recently diagnosed with stage 4 gfr 60 and after much research I found that a diet change will have a big impact on kidney function Also check out dadviceTV on KZbin he is a kidney warrior as well and has great content!

[@Bhatia423]

Zach K , thank you. Yes you both are Kidney warriors. I will research dadvice tv. Thank you so much for the 411. Many blessings to you🙏❤️

[@sumitbuddy]

Hey hi i want my iga treatment can anyone help ? I am from india.

[@Ali-sj3lm]

Consult a nephrologist. (Arun kidney centre Vijayawada)

[@TheRavi24]

I am 34 years old India born. Now stay in South Africa. I was having normal fever in 2012 and doctor suggested me to go for normal blood and urine test and after kidney biopsy I was diagnosed with IGA Nephropathy. I was on steroids and blood pressure medicines. After taking medicines for few months i left taking medicines. But in 2017 again went through full body checkup and found that creatinine level has increased to 2.4 and GFR is 33%. Now taking steroids , Angistensin , fish oil supplements and immunosuppression medicine. maintaining GFR between 25% to 30%. Please suggest.

[@sajidsaifi8233]

Ravi joshi bhai, koi immunosuppressive treatment se kuch farq pada?

[@onlineteachers7862]

Pls be serious about your treatment,don't discontinue your medicines. Do all the routine check-ups suggested by your doctor, and strictly follow your medicines.

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that. Another source; pubmed.ncbi.nlm.nih.gov/?term=IgA+nephropathy++gluten

[@toddlewis5404]

I still have it and It and I hate it

[@ganeshm7718]

3 stage iga did they need dialysis

[@pupax2000]

IgaN sucks, stay strong peeps

[@tharinduhasantha3564]

👍👍

[@jaharodencadingilan3647]

My igan is very pain every day..did you experience like this?

[@AmyChen-py3jj]

i get flank pain . What’s your kidney function?

[@spogmayinayat9280]

Also I want to ask can an IgA nephropathy patient give birth ?

[@marybrito5864]

Yes, I had healthy baby. I had 37 gfr

[@osteopathichomeopathicking6154]

It's hard to listen to these frauds as they commit patients to death and disfigurement year after year. I feel especially bad for the victims. Effective treatments are kept from the patients in favor of profiting off their misery; IgA Nephropathy is completely preventable yet somehow Doctors are not interested in curing or preventing the disease but only in immunosuppressants . kzbin.info/www/bejne/i2OvfY2nhtBlla8 Same with type 2 diabetes; kzbin.info/www/bejne/mpKUp6mfnN5oqrM Also if you're tired its almost 100% likely it's your blood pressure medication but incompetent doctors will also deny that. Another source; pubmed.ncbi.nlm.nih.gov/?term=IgA+nephropathy++gluten

[@oNanemo]

It depends of your GFR levels, because if your kidneys are in two bad conditions, it can be a danger for both you can the baby. If your kidneys are still OK, you should be able to, but I think there's a risk that it will damage your kidneys more (because pregnancy is hard on the kidneys). In any case, check it with your doctor. Some people have even gave birth while on dialysis, but that's very very risky.

[@jasminevaughn5214]

Does this cause pain

[@homepage400]

No

[@Pr0ph3cy-k5z]

Yes. Pain on 1 or both sides of the back, under the ribs.

[@mujahidkhan3257]

Hi. I g a nephropthy peshant 70/ 30

[@sriambikapothala7010]

What is 70/30

[@krishnakumar-cr7fy]

I'm also diagnosed with iga nephropathy two years ago, now my EGFR is 40%. I'm living happily without any issues, keeping my diet clean. Shall we create telegram group.. Those who're interested give a reply..

[@paramukeerthi1532]

Yes I am interested...

[@paramukeerthi1532]

My brother having iga nephropathy.

[@tekel6900]

My brother has iga and is now having high blood pressure he goes in tomorrow to see his kidney function. I'm praying for him, and I'm sorry for all who suffer with this

[@yadhukrishnan8081]

Ys

[@santhoshkp3500]

please link here