Hi everyone 
new to this. I’m a mother of 2. I’m hear because my son 22 was diagnosed with iga neuropathy a year ago. He’s doing ok and has a lovely consultant. He’s only had 1 flare up this year so far 
. It’s a worry and is there any one else hear with same diagnosis and how is things. Hope u all are doing well xx
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Welcome to the forum @Kathy76. I’m sure someone will be along who can answer your questions!
Maureen
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Hi, I just started a thread asking about IgA and then saw this, apologies for missing it previously.
I feel for your son, that’s a young age to be diagnosed with this.
I only had it discovered aged 40 ish, and my eGFR was in the high 60’s, and “mildly interesting” as the consultant mentioned at the time.
Fast forward 15 years and I am eGFR 13, and there have been many rollercoasters of numbers dropping like a stone, followed by months of stability, and many, many amounts of drugs thrown at it to reduce BP, slow heart rate and generally relieve the stress and pressure on blood vessels and my kidneys.
I had just moved to the final tests for being on the transplant list this year, with 2 live donors up for testing, when I got my cancer diagnosis. That’s kicked the transplant in to touch for at least 2-3 years now.
How is your son managing things, and what sort of numbers is he on? If it’s early, whilst there isn’t a massive amount he can do as far as I know, getting a good dietician involved can certainly help slow things by avoiding certain food stuffs.
Before seeing mine, I wasn’t aware that so many fruit or veg were off the ideal list, thinking, eat that and it’ll help. Evidently, it doesn’t 
Good luck to him and you, hope it is a very slow decline if at all 
Hi. My son has only had 1 episode this year of blood in urine. He’s stage 1. I’m still learning all about numbers and stuff. As a family we try to be careful with salt and processed food. The consultant said at this stage he should just not add salt to food. He’s at Silverstone today with his dad. I want him to enjoy life as much as possible. Do you think u had iga very young but it went unnoticed? We are upset about the diagnosis I don’t kno what the future holds. But none of us do. Thanks for replying I’m Kathleen nice to meet u. Your also young xx
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When you say 1 episode, that may not be reflective of serious ckd and could be any number of issues
But as stage 1, it’s not a worry and just to monitor things for the time being. His eGFR number and what is was a year or so ago would be a good indicator
Looking at his hospital letters there’s things I don’t understand. It’s all new. Where would that info be on his letters. Maybe I get a new understanding of it x
Just read ckd g1 A2 if that makes sense. When I say episodes I mean he gets a lot of cold and coughs. And each time that happens he has blood in urine. Then his consultant will request bloods and urine samples to monitor his kidney function.
Has he been diagnosed with IgA specifically? With that category, G1A2, his function is normal, so it could be 20+ years before it’s anything to worry about, but the eGFR is the monitoring number really
The cat he’s in is more about protein leaking, which was a sign for me eventually being diagnosed
I don’t know how long I had it, it could’ve been years, but apparently, it typically starts to show / develop in your 40’s from what I read at the time.
I would say, subject to his eGFR numbers dropping, he’s going to be ok for a while possibly, and it could be that being found early, it’s more manageable with medication to ease it.
But as I understand it, IgA is something we can’t get rid of or treat yet really, but just medicate the symptoms and make the pressure on the kidneys as little as possible. So no salt etc is a good start, try and check here for meals, as you could be surprised what you should avoid with this too 
I’d also add to not worry about it yet, yes enjoy life, but do so as a way to enjoy life for what life is, not to just enjoy it because there’s fear of not being around long, make things overly special and push to do things as a sort of bucket list.
That’s 2 different things.
Just be natural, be relaxed, enjoy life as a pleasure. I find trying to be as normal as possible, is better than people saying, oh you’re so strong for getting through this, oh how do you cope, aren’t you worried, oh it must be so tiring, blah blah blah.
Yes to all of that. I am tired, I’m scared at times, I’m exhausted and drained from the appointments, tests and the waiting.
But I don’t need to be reminded of it every day or week, I am normal, I can do normal things, and up until a few months ago, I could walk a marathon, or do a 10 mile hike with friends.
I am trying to just continue being normal and “me” and not the kidney patient, not the person on dialysis, not someone with cancer.
That isn’t defining me or who I am, and I hope your son does things for him, not because he thinks he’s on borrowed time, but because he can just do them and experience and live life
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Sorry your going through this I understand what your saying. My son has had biopsy confirmed which is iga. It’s early stages but doesn’t stop the worry. But what we realised is life brings all kinds of challenges and so we not going to let that stop any fun. We like you are going to carry on as normal educate ourselves more about food. And listen to the professionals. They deal with this all the time. It’s crazy tho. Because at the very beginning of all this my sons first doctor he saw with his symptoms said its bergers disease it was a further 1 half year before actual diagnosis. At first we were devastated. But now we not letting this stop having a life. Be strong u and you sound positive never change xx
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I’m so sorry to hear his diagnosis. Stage 1 is very early, it’s information in advance rather than reaction time. Having knowledge is key for you to feel in control and to help you to come to terms with it too. Like the other person said, enjoy life as it is with little adjustments to help along the way… reduce salt intake, keep hydrated, do some exercise he enjoys to stay fit/well and allow him to talk or not talk about it to reduce his stress or worry along the way. Sounds like he has a very supportive family and that will be key to reminding him who he is and not the diagnosis. Some people don’t get the warning from stage 1, do see it as a gift to help you. All the best to you all.
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Thankyou for replying it’s nice to hear other people and what there going through what advice then can give it all helps xx