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Behind the Mystery: IgA Nephropathy 

The Balancing Act
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Although it manifests in the kidneys, most scientific studies have found that the cause of this serious kidney disease begins in the gastrointestinal tract. As the disease progresses, up to 50% of patients end up at risk of developing end-stage kidney disease and possible dialysis within 10 to 20 years.
The challenge with IgA nephropathy is that most patients don't actually know they have the disease, and most are diagnosed by chance. Currently, there are no approved treatment options, and everybody in this disease advances at a different level.
There is a significant unmet need in the treatments offered to patients and a need to target therapies at the very beginning of the disease, which is the production of abnormal IgA. The Balancing Act met with nephrologist Jonathan Barratt of the University of Leicester in the UK to learn more. Plus, we meet with a patient, John, whose diagnosis came as shock but is working to help others through his work at the IgA Nephropathy Foundation.
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4 окт 2024

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Комментарии : 118   
@NechelleP
@NechelleP 3 года назад
im gonna be a part of a clinical trial next year here in s.korea and i hope and pray that the result will turn out great!
@shawnxrox
@shawnxrox 3 года назад
What clinical trial are you enrolled in? How are you feeling?
@ShivamSingh-kq4vs
@ShivamSingh-kq4vs 3 года назад
Ma'am please reply. What medicines are given to you during the clinical trial. What response your kidney has given to it. What's the outcome of the trial?
@averell8041
@averell8041 3 года назад
Good luck!!
@zakme5638
@zakme5638 3 года назад
@Purdue Pharma so ,it's all about gluten free in that article, there's no panacea for IGAN currently, unless the disease goes into remission or miracle happens, I read about patients who got rid of it naturally by changing thier lifestyle to healthy one, good balanced diet and exercise .but still doesn't work for everyone unless a cureall is found or the course of the disease differs from one person to another.
@zakme5638
@zakme5638 3 года назад
@Purdue Pharma @Purdue Pharma Tbh with you, when I was diagnosed my nephrologist didn't give me broad explanation about that disease, but I searched it for ma self and educated ma self about ma condition and the disease, the drugs you referred to I'm by no means support that bcz they may lead to other health issues and make things fester, I read about the gluten free diet back in day I was inquiring, I know it's a main cause bcz gluten can be associated with many autoimmune diseases ,what I'm trying to say about lifestyle isn't a doc advice it's like when you're told there's no cure ,it's better one must take his health seriously and start researching, the net is good source and connect with healed patients. I'M not completely dismissive of the link of the article you provided, rather I benefited from it ,but what I mean there's no ultimate cure but control the progression.thnks for the link for the podcast I'll tune to it later, Have a nice day too : )
@Matt133
@Matt133 Год назад
Was just diagnosed with IGA. Had a really bad stomach flue that my daughter brought home from daycare, doctor took a urine sample and found protein and microscopic amounts of blood. Ended up having a biopsy and they found I have IGA. My kidney specialist says I am very early stages and still have full kidney function, I'm turning 36 soon. Scary to think of when you have kids and don't want to leave them without a dad.
@AmyChen-py3jj
@AmyChen-py3jj 10 месяцев назад
Did you have to take any steroid ? I have the same problem like you . I have blood n protein in urine and my kidney function is normal . The doctor asked me to do bisopy to confirmed it’s an IGA
@Matt133
@Matt133 10 месяцев назад
@@AmyChen-py3jj no steroid for me, they went right to the biopsy, I just went for my 6 month check up and still normal kidney function. Do not watch any videos of the biopsy before you get it done, I made that mistake and it freaked me out lol
@GabeBushman
@GabeBushman 4 месяца назад
As long as you don't have the high blood pressure to go with iga it shouldn't mess with your kidney function. Sadly I reached kidney failure and now on dialysis
@adamwilliams858
@adamwilliams858 Месяц назад
I'm 35 next week, and I'm currently in the early stages . I've seen a specialist once but she seemed confident that taking blood pressure meds would allow me to live a long healthy life 😢. This video is making me think otherwise. I was meant to see the specialist again next week but they presponed yet another month 🤦. Has the cure been found now . Or is my specialist wrong 🤔.
@drfrancescagajete3390
@drfrancescagajete3390 3 года назад
IgA Nephropathy patient, on mya 2nd year of my 2nd kidney translant. First one lasted for 10 years.
@GabeBushman
@GabeBushman 4 месяца назад
Does iga come back after transplant?
@monikababai4677
@monikababai4677 3 года назад
Can we know more of this successful trial?
@NicCamp093
@NicCamp093 2 года назад
Today i was diagnosed with IgA Nephropathy. I am 29. I only started to feeling pain 3 months ago in the middle of the night. Both of my kidneys are around 50%
@JWSparks
@JWSparks Год назад
I’m 33 my kidneys are less than 7% IgA found out 6 months ago.
@elizabethmckenzie3373
@elizabethmckenzie3373 Год назад
I’m 28
@melekcoskun1150
@melekcoskun1150 20 дней назад
6 ay önce bana igA nefropatisi tanısı koyuldu cokkk korkuyorum 😢
@muhammedbilgin429
@muhammedbilgin429 2 года назад
I am 34 after a hypertension problem, and my urine test comes with blood and protein. After that, they found 3A phase kidney disfunction. After a kidney biopsy test, they came up with IGA disease, which scared me with no cure. They have only given me medication that I took before for hypertension, vitamin D3, and cholesterol remedy. These 3 medications will help or not, I will see. I need your prayer.
@MadManmaccccc
@MadManmaccccc 9 месяцев назад
How is it going for you now? Mine seems to be a similar case
@gbellarosagalvez02
@gbellarosagalvez02 5 месяцев назад
Me too
@melekcoskun1150
@melekcoskun1150 20 дней назад
6 ay önce iga nefropatisi tanısı aldim çok korkuyorum 😢
@thelion9863
@thelion9863 3 года назад
I am 37 years old man. I have been on dialysis for 10 years and still going. I was diagnosed with iga in 2011. The clinical trail going on right now is called LNP023.
@user-zc8sq3wr9f
@user-zc8sq3wr9f 3 года назад
@Purdue Pharma how? Your link directs to a gluten free diet effect on people with iga Nephropathy
@Vaguspostedat
@Vaguspostedat 3 года назад
@Purdue Pharma Sir ,in IgA nephropathy it's the creatinine and renal failure that's significant markers Serum IgA is not an indicator of the disease progression as they are immediately deposited in kidney IgA nephropathy has an associated to coeliac but not always Hence gluten free diet may aid in symptoms but cannot stop progression to renal failure
@VIKASHSINGH-bz6dt
@VIKASHSINGH-bz6dt 2 месяца назад
What's the result of trails
@tayloryvonne6615
@tayloryvonne6615 3 года назад
I was diagnosed with iga at 13. I was very sick when I first was diagnosed but it got better slowly and I was able to live normally for a number of years. I'm now 27. 14 years after my diagnosis I'm having problems again. Always so damn tired and just don't feel right. I'm scared. Honestly
@zakme5638
@zakme5638 3 года назад
💔,I feel you on that ,but don't give up on yourself, there's still hope for cure or maybe remission,I believe in the power of positivity and struggle despite pain.I was diagnosed when I was 23,it was a bit hard to accept it,but with the passing of the time I came into term with it,I'm 26 now,still no symptoms at all which my doc says your condition is better than others ,with tablets my protein intakes dropping between500 mg and 250 mg,after it was 2000mg,I wanna hit 150 mg ,this happened bcz I changed ma lifestyle. But after some months of depression of how to do,I decided to change ma lifestyle, I eat rightly, I exercise daily and this helped ma mental health to improve and maybe just a little changes in our lives could turn the tide and work wonders. Cheers !
@hafizjamal1606
@hafizjamal1606 3 года назад
Dear where you get your treatment because I have the same disease......pls tell me
@zakme5638
@zakme5638 3 года назад
@@hafizjamal1606 visit a nephrologist, and study your case well,know your illness, via research on the internet, just to know how to manage your case ,and nutrition as well,eat healthy food,exercise regularly, sleep well ,stay away from junk and salty food bcz their is a risk of high blood pressure, hope that helps, enjoy the moment and don't worry much about the future .stay blessed.
@marybrito5864
@marybrito5864 2 года назад
Wow I’m 27 and was diagnosed at 12, so crazy because I’m also going through the same thing.
@wenchaowang-pg6xf
@wenchaowang-pg6xf Год назад
God will bless you !
@kailasnath7733
@kailasnath7733 2 года назад
Please upload videos more about this medication research so that it can be cured.
@chada472
@chada472 2 года назад
I am 63 and didnt know I had IGA and had good GFR for over 10 years. After getting the covid vaccine my GFR dropped by 50% and I had symptoms of IGA. No more vaccines for me.
@janjan6661
@janjan6661 2 года назад
Stay away from immunosuppressant it also creates more problems and more medications. It never ends.
@Oatmealxxx
@Oatmealxxx 2 года назад
May I ask which covid vaccine you got? Was it Pfizer or Moderna?
@chada472
@chada472 2 года назад
@@Oatmealxxx Moderna
@angiesmith8992
@angiesmith8992 2 года назад
Same for me after phizer
@burningbright5039
@burningbright5039 2 года назад
I developed it without any vaccine so they are spraying this in the air or putting it in the food!
@yashaswigyanpuri833
@yashaswigyanpuri833 2 года назад
Please do let us know about the successful clinical trial?
@tearsbeers
@tearsbeers 3 года назад
I've had Iga nephropathy for 10+ years. My theory is that iga nephropathy is just a part of our auto immune disorders. I'm also allergic to all pollen and I'm undergoing immune therapy for it. Also I'm allergic to peanuts. When I cut out the peanuts the blood in my urine and my stomach pain dissappeared. Get tested for allergies!
@vashisthapatel
@vashisthapatel 3 года назад
Hi tearsbeers, I have IgA and my creatinine is slowing increasing over the years. It’s been 3 years since diagnosis and my creatinine has bumped from 1.2 to 1.7. I am worried about the increasing levels. Any tips to help out?
@tearsbeers
@tearsbeers 3 года назад
@@vashisthapatel get the blood pressure under control. Lisinopril is a good drug to take. Also eat plenty of fruits and veggies. Get tested for allergies
@vashisthapatel
@vashisthapatel 3 года назад
@@tearsbeers thanks a lot! I take Telmisertan 40mg (ARB) every day to control blood pressure and proteinuria. They are both stable for now but the creatinine keeps on slowly rising. It hurts to know there is nothing I can do about it! I want to get tested for allergies now and also try a lectin free diet to see if that helps. For the last few months, I have turned completely Vegan and that has helped tremendously in controlling my diabetes, cholesterol levels. They are both fine now without medication. Thanks
@KurokishiYT
@KurokishiYT 2 года назад
@@vashisthapatel Hey man. How are you doing now? Did you manage to bring your creatinine levels down??
@vashisthapatel
@vashisthapatel 2 года назад
@@KurokishiYT my proteinuria is definitely under control within normal range. Blood pressure also okay with daily cardio and eating habits. I keep my BMI around 23. Only concern for now is my creatinine which is still around 1.6. I have definitely benefited from tearsbeers advise - get tested for allergies. For me, stoping all dairy products and going vegan has done wonders. Also exercise almost every day and keep my BMI around 23. Hope this helps you. It is difficult to let go a lot of good food options but can’t see my kidneys suffering so have been sticking to this diet for over 6 months now. Let me know your experience and if there is anything you wish to share.
@marettalisa2316
@marettalisa2316 2 месяца назад
What is the clinical trial of IGA Nephropathy. I want to participate
@piyushwalter8524
@piyushwalter8524 3 года назад
Hey Can Someone Guide Me How Should I Enroll My Mother Suffering With IgA Nephropathy In A Clinical Trail? Thanks
@altonmarsh5569
@altonmarsh5569 3 года назад
I'm a kidney patient myself. When iga was discovered inside me it was already so bad to the point where I went straight on dialysis. And I was/am in end stage renal failure.
@misslaylay2006
@misslaylay2006 3 года назад
Wow. I here that a lot that people don’t find out until kidney failure. I was tired all the time and didn’t feel right. Also I had bad headaches. But I didn’t think anything of it. They knew something was wrong but ignore me. Tried to get a lawyer. Maybe if I went into kidney failure maybe that would be good enough for them. I do have kidney damage though
@zakme5638
@zakme5638 3 года назад
💔
@altonmarsh5569
@altonmarsh5569 3 года назад
@@misslaylay2006 I had the exact same symptoms and experiences. I would always try to sleep and had bad migraine. Had no energy. And I went to go get looked at and they were very close to sending me home. Said I was in front of a screen too much. They said if they would’ve let me go about 3 days later I would’ve died. My creatnine when I went into the hospital was 16.
@user-zc8sq3wr9f
@user-zc8sq3wr9f 3 года назад
@Purdue Pharma stop providing misinformation
@ameliahandy1407
@ameliahandy1407 5 месяцев назад
@@altonmarsh5569my story is almost identical identical to yours. I went into ICU with massively high blood pressure, almost died. Was at end stage already, had no idea. I’m now two years tx. Hope my kidney stays strong and healthy ❤
@santoshgupta-qf3ey
@santoshgupta-qf3ey 3 года назад
How i can join clinical trials. My iga is accidently caught at very early stage
@monikababai4677
@monikababai4677 3 года назад
@Purdue Pharma It says that ". The data of this study indicate that a gluten-free diet can modify SOME immunological abnormalities in a group of IgAGN patients, reducing levels of IgAIC and IgA to dietary antigens." BUT: The clinical course DOES NOT SEEM to be favorably influenced, since a relentless PROGRESSION towards renal failure was observed."
@richardjanssen3538
@richardjanssen3538 2 года назад
I have it as well but in both kidneys
@vishnuraja.s5566
@vishnuraja.s5566 3 года назад
Am a patient of IGA. 45% damaged. Currently things are under control. Recognized on 2018. Its been 3 years now. Am fine as per was just 23 aged during that time. Any idea how long my kidney will work smoothly?? Now my kidney is working well, all results are also fine. And wat will be the best diet to avoid failure??
@krishnakumar-cr7fy
@krishnakumar-cr7fy 2 года назад
Hi vishnuraj, I'm also suffering from iga. 60% damaged
@vishnuraja.s5566
@vishnuraja.s5566 Год назад
@@krishnakumar-cr7fy take care well brother
@vishnuraja.s5566
@vishnuraja.s5566 Год назад
@@DeepakRajput2000 now things are under control. Have to be too much strict with diet.
@vishnuraja.s5566
@vishnuraja.s5566 Год назад
@@DeepakRajput2000 bro, are u patient or any of ur close one is a patient. ? And any thing u wanna ask, pls do it here na. So it will help others too. Plzz don't feel bad, i usually don't give numbers to anyone, thats y
@muratonurcelik5163
@muratonurcelik5163 Год назад
@@vishnuraja.s5566 hi bro, i'm 20 years old. I was diagnosed with Ig A 2 months ago. (GFR 100)(24h protein 2.2 grams) (creatine 0.9) I've been using steroids and blood pressure medication for 2 months. Will this disease go away? How are you now? How did you receive treatment? thank you..
@abdulghafoor9125
@abdulghafoor9125 8 месяцев назад
Doctor please I want diet plan. Reason blood pressure my high and my age 41
@abdulghafoor9125
@abdulghafoor9125 8 месяцев назад
No is my well but I want diet plan only I want to diet plan please this❤❤❤
@craigwinter2802
@craigwinter2802 3 года назад
Waiting on my 2nd transplant because ot iga.
@misslaylay2006
@misslaylay2006 3 года назад
Wow.
@sanjoybiswas1294
@sanjoybiswas1294 3 года назад
How long the first kidney lasted
@craigwinter2802
@craigwinter2802 3 года назад
Things have change for me . I got put back on transplant list then my kidney shot back up to 25% and been staying there so not on list now.. I'm 2 year post
@user-zc8sq3wr9f
@user-zc8sq3wr9f 3 года назад
@@craigwinter2802 how long did the first one last?
@johnmarsala7398
@johnmarsala7398 2 года назад
I just had my first transplant on Jan 6. Doing good right now
@Lucius-z6e
@Lucius-z6e 10 месяцев назад
A month ago im diagnosed with IGA kidney failure and heart failure. So my doctor started me on prennedisone 60mg. I had no knowledge how evil this drug is. I blew up and i was going crazy my wife was so worried for me she said imma call 911 bcuz your not yourself.
@GabeBushman
@GabeBushman 4 месяца назад
I'm 23 and with iga kidney failure on dialysis. I took prednisone for awhile and it made me very amped up and unfiltered with anger issues. It's very strong. Glad I'm off it.
@baig8003
@baig8003 4 месяца назад
did it help improve renal function
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