IgAN & Me

Back in 2019, I heard three letters that would change my life: IgAN. For those who don’t know, that’s short for IgA nephropathy, a kidney condition that, quite honestly, I’d never even heard of before my own diagnosis.

One minute I was just getting on with life, albeit navigating the effects of chronic kidney disease (which I found out is a complication of IGAN) , and the next, I was being told by my renal consultant that my immune system was having a bit of a wobble and attacking my kidneys. Not quite what you expect to hear on an average morning in October, is it?

If I’m honest, the news was a mix of relief at finally knowing what was wrong, but also a lot of confusion. I mean, how could something that sounded so foreign have anything to do with me? I remember my renal consultant giving me a website address to go to for further information; it was no help! The truth is, there as a lot that the medical experts, including renal consultants, don’t know, and still don’t, which can make things feel a bit isolating at times. It makes going to hospital fun, especially when you are treated like a rare being because you happen to have a rare kidney disease. But it does mean, if I ever get asked, I’d know what RaDaR is. Do you? More on that later.

Living with IgAN means regular trips to the GP surgery and hospital, endless hours in waiting rooms, and learning that your blood pressure is now everybody’s business. It’s not all doom and gloom, though. Over the years, I’ve learned to listen to my body a bit more, give myself a break when I need it, and try not to sweat the small stuff, and most importantly keep on top of my mental health.

Some days are tough, especially when the fatigue kicks in or my test results aren’t what I’d hoped. But having lived with IgAN since 2019, I’ve come to realise that it doesn’t define me. Yes, it’s a part of my life now, but it’s not the whole story. I still try and enjoy the things I did before, I still make plans for the future, although they are a lot less now, and I still have a good laugh. If anything, this diagnosis has made me appreciate the little things even more and taught me to take each day as it comes.

For anyone else out there navigating an IgAN diagnosis, just know you’re not alone. There’s a community of us muddling through, and together, we’re stronger than we think. Cheers to more good days, and plenty of hope for the road ahead.