Vasculitis UK
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microscopic polyangiitis

Hi,

I am 21 and I have been diagnosed with a microscopic polyangiitis vasculitiis since 2015. Since then I've been in remission. I would like to know, Does anyone have this illness and about my age? I know there is no age for diseases.

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I am 46 just a bit older than you and also have MPA since April 2013 , it doesn't care what age you are there are good and bad points about being 21 as there is 46 ! This is a good place for help and advice if you need anything

Good luck

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Thank you for your reply. Yes you're right for the age. I wasn't expected to be diagnosed with an autoimmune disease at all. I'm glad to have found this good place :)

Have you ever got a recurrence since then ?

Hope all goes fine for you.

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Hi

I've had a couple of flare ups but at moment it's the drugs causing havoc but I know I've been very lucky !

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At 66, I'm closer to your grandma's age, but I ran across these videos when I was first diagnosed. There are some young people in them - as young as 12, if I remember right. You might try contacting them through vasculitis.org (a US org).

vasculitisfoundation.org/mc...

Best of luck to you. May you stay in remission until you're my age!

Pam

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Thank you very much for the videos! Hope all goes well for you.

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Hi. As has already been said you can get vasculitis at any age but it tends to follow a bell curve against age. Only a few get it when they areally young and then it peaks for people in their fifties, then tails off again after that. The main thing is to try and live your life as normally as you can and the key to that is understanding your disease and getting good treatment. Chris

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Hi, I am now 49 but first had MPA when I was 16. After 2 or 3 recurrences up to the age of 21, as the doctors tried different approaches to reduce the drugs, I have not had the diseases again. Remember that this was in the mid 1980s so they had less experience then on the best way to prevent recurrences. Hope all goes well for you.

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Thank you for your reply. Are you still on drugs?

It feels good to talk to people who went through the same. I come from France and actually I haven't found any persons with MPA yet.

Hope you're still well.

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Hi, yes I'm very well thanks and still on some drugs. But the fuller story is that when I reached 24 I had kidney failure, as my MPA was diagnosed quite late, (it was not well understood in 1983,) and then with recurrences there was some more kidney damage, and so then I had a kidney transplant. This was almost 26 years ago now so it has all worked out really well. The drugs I take for the transplant are immuno-suppressants, so also help prevent the MPA returning. But I must say that neither the transplant nor the MPA has affected me negatively in my life so far.

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My daughter has Systemic Vasculitis. She was 28 when it began and now it is 9 years later. I have been researching and it seems as if the 20's is most apparent for onset of this disease. I wish you well with your fight against it. If you want to talk to me, I am on the net and I would be very happy to talk.

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Granulomatosis with Polyangiitis seems to be more common in young people than Microscopic Polyangiitis although these types of vasculitis can be similar in presentation. There is a young vasculitis Uk support group on face book with 135 members from about 15 years to 30 years old.

Not sure where you live but Vasculitis UK are holding a young weekend in the Peak District this month and if it is successful will be holding another one next year. At the moment there are about 25 booked in. This is the link vasculitis.org.uk/news/youn...

You can also read stories on the website if you follow this link the youngest being 9 years old. vasculitis.org.uk/living-wi...

ANCA vasculitis has to the potential to be quite aggressive in young people so it is important you are seen by doctors who have the experience and the knowledge.

Best wishes

Susan

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Hey I don’t know if you’ll look at this, since it’s been two years and all. But I wanted you to know that I have MPA and I’m sixteen. I was diagnosed at thirteen. I was diagnosed with a different type of vasculitis called HSP when I was nine. I understand what you mean about finding someone to relate close to your age. I haven’t found anybody yet.

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Hi MakennaMarie. I'm sorry to hear about your diagnosis at such an early age. I'm 22 years old but started feeling unwell around age 18. I've undergone various treatment and so far my ANCA levels are gradually decreasing. Please feel free to msg me anytime. It's so important to reach out and stay connected with others in a similar situation. :)

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