33 an just diagonsed any feedback welcome

[aimee]

Im 33 an just diagnosed any feedback would b welcome

[PatriciaAnn]

Hi Aimee

Have they said which of the vasculitis diseases you have? There are a number of diseases and some have different symptoms, treatments and prognosis.

PatriciaAnn

[aimee in reply to PatriciaAnn]

yes they say huv im having lots of symtoms at moment just trying to get used to this so thankyou for replying any info would b more than welcome xxx

[mvennitti]

You can check out vasculitisfoundation.org/g for support or facebook.com/groups/vasculi.... It is important that you find out what type you have. They all have treatments can the out come can be very positive with proper combination of treatments.

Best of luck. you can find me on twitter @mvennitti or facebook if you need more direction.

Marianne Vennitti

Cryoglobulinemia Assistant Director.

[aimee in reply to mvennitti]

huv they have said it is , ive had lots of health issues over they years ive had a stillborn wee baby boy 4 misscarriages, a bleed on they brain, doc thinks these antibodies is all the cause so its a releive to finally no there is a reason .My wee girl just 4 an she has rash on body al time so testing antibodies to see if they fine an i hope d god they are thank you for replying xxx

[AndrewT]

Hello Aimee,

I was dioagnosed at 37, so not too diferent to you, I'm now 50. My vasculitis is 'uncatagorised' ie about five 'strains' overlapping. I am also on dialysis, three times a week; due to kidney damage, I also have heart damage and, as if that wasn't enough, brain damage too! I AM however still alive, which 'they' didn't expect me to be!! I was given about three weeks to live, fifteen years ago;in short don't give up hope.

Please let me (us) know how you get on.

Very best wishes

AndrewT

[aimee in reply to AndrewT]

so sorry to hear this ive been told its huv im just trying to get as much info as possible as ive been suffering lots of symtoms at this time an putting my faith in doc xxx

[hamble99b Volunteer]

I was diagnosed with WG at 37 and am now 55. what have they said it is?

[blrkunal in reply to hamble99b]

This is great, how did you maintain a good health all through?

[aimee in reply to hamble99b]

they say it is huv just finding out as much as i can suffering lots of symtoms at moment hope to get it under control soon wat is wg im not sure is why i ask

[aimee]

i have recently been diagnosed with hypocomplementemic urticarial vasculitis, i dont know what way to think about it, so i would be grateful and welcome any information/advice on other peoples experiences with the condition

thanx

[RichardE Volunteer]

Hi Aimee. It's a bit late and I've only just had a nod to look at your post, so I'm afraid I'll just give you a short reply now and put more info up tomorrow. In the mean time you might want to check out a page on the VUK website that has quite a bit of detail on HUV :

vasculitis.org.uk/about-vas...

Anyway, I also have HUV. I was diagnosed at 47, just over 3 years ago, so can hopefully help answer any questions you might have. We have one of the rarer types of Vasculitis although there's now a growing band of about 6 of us in the UK (including yourself) that I'm aware of.

Will post again tomorrow.

All the best,

Richard.

[aimee in reply to RichardE]

Thanks for your reply Richard im just getting used to this illness and trying to get it under control , my symptoms include large welts all over body, swollen limbs ,sore muscles ,closing over of the throat.I had 4 misscarriages 1 stillborn and a slight bleed on the brain over the years and my doc seems to think these antibodies were the cause so its also great at the same time to get diagnosed im just about to read the sight you but up so thanks again for your reply its good to no im not alone xxx

[RichardE Volunteer in reply to aimee]

You're welcome Aimee.

Sorry to hear that you're suffering at the moment but hang in there. As long as your consultant is on top of the disease and treating you appropriately things should start to improve. It may just take a while.

Do shout if you have any questions though.

All the best,

Richard.

[aimee in reply to RichardE]

thank you i will do if needed thanks again

[RichardE Volunteer]

Hi Aimee. Don't know if you've had a chance to read our piece on the website but if you have any questions please ask away. Despite there not being many of us with HUV I think it's true to say we're all very supportive of each other so if I can't answer then someone will

And try not to worry about all the possible different symptoms that are mentioned. Everyone's Vasculitis is personal to them. I think that every one of us with HUV has different problems to deal with so it will be no surprise if yours doesn't fit exactly. Unfortunately that's why it's hard to get a correct diagnosis.

But remember, with the correct and appropriate treatment it is possible to get into a good state of remission and live a relatively normal life.

All the best,

Richard.