IGA NEPHROPATHY

[Lakhyadeep]

i am having a ceatemine of 6 and suffering from IgA Nephropathy

Will I be cured

plz help me...

my age is just 14 years and I am still studying in school

[Hidden]

hello I can’t say you will be cured. Do you have kidney disease? Yes neuropathy is common. I have numbness also in my feet and hands. Did they prescribe anything to you for it.. does your feet change color or just pain? I would say talk to your Doctor and tell him your issues..

[Hidden in reply to Hidden]

NB. It’s nephropathy not neuropathy which I suspect is different?

[Hidden in reply to Hidden]

Yes spelling error😂thanks

[Hidden in reply to Hidden]

It’s a tricky one to spell and hard enough to pronounce!

[Hidden]

I also have this, diagnosed in 1993 and as far as I’m aware there is no cure. However I recently saw a request for volunteers to trial a new drug that is developed to treat it so medicine to at least manage it may be available within a few years.

[Hidden in reply to Hidden]

Hello was your numbness related to your kidneys? Thank you

[Hidden in reply to Hidden]

I have never suffered numbness, that’s a symptom I wasn’t aware of and the reason why I thought you may have been confused with neurological condition (the typo).

My urine contains high blood level although it looks clear. Since being diagnosed with mild to moderate hypertension 12 years ago my doctor put me on BP medication and statins primarily to protect my kidneys. Otherwise I’m fine apart from occasional gout and inability to consume more than one or two units of alcohol without my head pounding when I hit the pillow to sleep.

[Hidden in reply to Hidden]

Thank you.. oh that’s good.. I have blood in my urine as well and trying to figure out why?.

[Hidden in reply to Hidden]

The way it was explained to me was that IgAN is an autoimmune condition where IgA over-performs and starts attacking your body. It’s one of your proteins or antibodies that lives in mucus membranes and the most vulnerable or delicate area is the kidneys.

I’ve just remembered reading about it back in the nineties where some medics and patients believed removing tonsils lessened it’s effect. Apparently tonsils produce the protein. I’m not sure what clinical evidence exists for this now though.

[Zazzel in reply to Hidden]

I have IGAN as well. I also have had hematuria ( blood in urine) both macroscopic and microscopic since 2013. They have not discovered the reason for it. I have also had neuropathy as you mentioned. Numbness, tingling in hands and feet. I don’t have diabetes and my neurologist said it was not pulmonary neuropathy which is often associated with kidney disease. After going more plant based, the body inflammation went down and I have had little issues with this any longer.

[Bet117 NKF Ambassador]

Hi Lakhyadeep,

Welcome! It sounds to me like you have been diagnosed with IGA Nephropathy, which is an autoimmune kidney disease.

Your feelings are very normal at this point as it is all new to you.

Kidney disease is not curable, but through diet and some exercise along with doctors care you can slow/ stop its progression.

Have you and your parents seen a nephrologist; a doctor who treats kidney disease? Very important.

See the doctor and have him/ her explain it to you. He/ she will probably give you appropriate medication to protect your kidneys and try to stop the protein spilling into your urine. As far as the invisible blood, it is called hematuria and is often present in people who have autoimmune kidney problems.

Ask your doctor to send you and your parents to see a renal dietician who will work with you to put together a low salt, low protein diet -suggesting foods which you will like and be healthier for you. It will also be based on your labs as certain foods will aggravate the condition.

The important thing is that you ask questions and that the doctor explains this and your test results to you slowly and in a way that it is easy to understand. Don't be afraid to ask questions.

I have attached a link explaining IGA Nephropathy for you to read. Most importantly, you and your parents need to have the doctor explain it to you and how they want to treat it.

Please reach out and write back to us as we are here to listen and support you.

Bet

mayoclinic.org/diseases-con...

[Zazzel]

Hi there,

Bet gave you lots of great info. It’s hard as a teenager to have issues such as kidney disease that involve changing your diet, but you’ve already reached out searching for answers so that makes you mentally strong and proactive. My nephew was your age when he had to change his diet for health reasons ( he is celiac) and is doing really well. There have been studies done which show restricting dairy and gluten can help with some IGAN patients especially children as they can cause inflammation in the body. Please discuss with your doctor and nutritionist before making any diet changes. It is particularly important since you are still growing that you get all the nutrients you need. I can’t stress enough though that you need to stay away from junk food, fast food, sodas, candy and processed food. All of these things cause inflammation which aggravates the disease and makes it worse. If you don’t already drink water, start making that your main drink. No more sodas. I know you are under age, but many teens become involved in experimenting with drugs, alcohol and smoking or vaping. Do not do these. Along with being illegal in most countries, they will not help you and can weaken your immune system. After working with a dietician, Start learning to cook and help your parents go shopping so you can learn about picking out healthy foods for yourself as this will be a lifelong commitment to eating healthy. As some of the food choices can be a little more restrictive, the rest of the family will likely be eating differently from you, so helping prepare your own food can ensure you get what you need. If you don’t already, start walking or getting some mild exercise. I’m sure this feels overwhelming as I know it did for me when I had IGAN, but you can slow down the disease. Also, make sure to stay warm this winter and get enough sleep and wash your hands often. Work hard at keeping yourself healthy. These are things I never paid attention to at your age and I would often get colds and flus as I wasn’t careful. I remember a doctor telling me that I would always have IGAN and even if all my labs looked good, I could never go back to old habits and ways of eating. After being strict for some time and seeing my labs improving, I got lazy and thought I could slip back into old unhealthy habits, but I was wrong. You have to commit to being healthy. You can do this!

[Bet117 NKF Ambassador in reply to Zazzel]

Dear Zazzel,

So beautifully stated! Agree totally as this will be a lifestyle change and will take time to adjust.

You are amazing! 🌞

[mbmills60]

I was diagnosed with IGAN at age 28 in 1989. Today, at 59, I expect to get a transplant in 2020 (my wife donated a kidney two months ago, so I could get a voucher and don't need to wait in line). For three decades, having IGAN was always something more theoretical than bothersome in the background of my life, until recently when my kidney function started to finally nosedive. Everyone's IGAN is different and I don't know the specifics of your case, but my advice is don't let this change your life in any way, except positively. As previous posts mentioned, it's a great excuse to eat right, stay healthy (flu shots, exercise, no smoking, avoid harmful substances). For three decades all I needed to do medically was manage my blood pressure and see my nephrologist 2-3x/year to check protein, creatinine (weirdly, there was little focus on my overall % kidney function -- GFR -- until recently, but that's another number you might keep an eye on). I've been on fish oil for decades as well, despite inconclusive science on its benefits.

My guess is, in a few decades, should you face end-stage renal failure like I am, the science will be well advanced from what it is today. Stem-cell therapies, gene replacement, even artificial organs are not far off in the horizon. We ALL have something going 'wrong' in our imperfect bodies -- and this happens to be your unique thing. There is no reason why having IGAN should keep you from living a long, healthy and happy life. Good luck!

[Jehope in reply to mbmills60]

hi mbmills60 how you manage Igan over 3 decades did u turn vegan?

[WYOAnne NKF Ambassador]

Welcome to our Kidney Community!

I think the most important thing is to learn as much as you can about your condition. As Bet117 said, you should ask your nephrologist to explain this condition to you, so you know what is going on. The internet also has many medical sites that also explain your condition. (Web MD, Mayo Clinic, etc) Look at NKF also.

- Seeing a dietician is a must. Many on this site have had great success in stabilizing their kidney function by changing their diet to a more kidney friendly one.

- Write down your questions as you think of them, so when you do see the doctor you will remember what you need to find out. I still do this, so I am prepared for my appointment. The doctor is there for you, so don't be afraid to ask questions. It's his job.

- Drink plenty of water. It keeps you hydrated and your kidneys happy and functioning well.

- Keep positive! Attitude is everything when dealing with a chronic health problem.

Good luck to you! We are here....