Vasculitis UK
5,680 members5,125 posts

Sick of explaining it! Pen pal needed!

So ill be the first to admit that before my dad was diagnosed 3 years ago i had absolutely no idea that Vasculitis even existed. But im sick to death of having nobody to talk to about the struggle. it sounds so selfish but with every other illness from depression to aids there's help group etc but this is almost like a unheard of evil.

Made worse by the fact that even medical staff are not armed with knowledge or wisdom.

I'm pretty young (23) so most of my friends parents arn't even retired yet, so they don't understand the hurt of watching a parent (who is in his early 40's) deteriorate rapidly.

I just wish i had someone to talk to who understood...... someone who also understands the illness...

Any takers?

Could do with a friend.

Lisa :)

7 Replies

Hi Lisa, there is a young persons group within the Vascultis UK website, you could talk with them. Ask John and Susan Mills for their contact details. I'm sure that they would before than glad to help.


We're all here to help if you need to leave messages. Someone will answer you.

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Dear Lisa,

There are, beyond a shadow of a doubt, young(er) people, on this 'forum'-in fact there is a group-within the group-specifically aimed at you all. However as an 'old fuddy-duddy', of fifty-three, I can assure you that you are, very, very definitely, amongst friends here. No-one will belittle ,make fun of, ridicule or 'put you down', in any way- quite the reverse in fact. We will all do our, honoured best, to support/encourage you, in any way we can- you may well find that we don't 'bite' at all!

Come to think of it- you might even find that we are 'armed' with considerable collective knowledge. Why not give us a try?

Very best wishes to you, and your dad.



Lisa, I am an Australian Mum of a 36 year old woman who has Systemic Vasculitis. I would be only too pleased to correspond with you. This illness is confusing, frustrating and just awful. Write to me, I will write back.



I know a lovely lady in Australia also diagnosed with Vasculitis if you would like to make contact Maureen x


Lisa I can send you some information to share just write an email to John.

I know exactly how you feel I was alone for two years when John was diagnosed back in 2001. Even our extended family did not understand or work colleagues and we both worked in a dental practice. x

Reply if you go to this web site or join us on facebook or twitter you will meet up with lots of us with different types of Vasculitis and you can always get support and advise and you may fin someone who lives close to you. I myself was diagnosed 18 months ago and had never heard of it before but have found the facebook site very useful and informative, you can tag me if you like and i will help you where i can. My name is Gloria Whitehead hope this helps x

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