Huv s vasculitis

[Cookyboy1]

Hi has anyone heard of Huvs Vasculitis, as my grandaughter has been diagnosed with it.??

[PMRpro]

If you haven't already found these:

rarediseases.info.nih.gov/d....

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

[Paprika60]

Yes, It is a vert rare form of Vasculitis mainly attacking skin and joints. I have had it for nearly 18 years. It is very important that your granddaughter sees an experienced specialist. It depends on where you are located but if you can manage, try to consult the vasculitis dept. at Addenbrooks, one of the best.A lot to take in, a lot to learn and adjust to. I do hope she will find a mild medication that will help her well. Good luck!

[John_Mills Volunteer]

How old is your daughter ? HUV is rare and as Paprika has stated she needs to see doctors with knowledge, experience and understanding of HUV. If you want to talk one to one vita the VUK helpline please do contact us. vasculitis.org.uk/helpline

[Cookyboy1 in reply to John_Mills]

Hi John, it's my grandaughter, I have PR3 Anca Vasculitis now it seems my grandaughter has H U V S vasculitis, waiting for bloods to come back from addenbrooke's, she is also being seen at Guy's Hospital London at only 17 years of age and after 2 years of finding out what was wrong with her at last things are happening, just have to wait a little longer to find out how they will treat her.

[John_Mills Volunteer]

It’s good hear Addenbrookes are involved with her care.

[Cookyboy1 in reply to John_Mills]

Thanks John, that's where I go for my infusions, going back say 18months ago I sort of had a feeling vasculitis was involved with what was happening to her and said to mark Mc clure about my thoughts and now things have progressed thank goodness.