If you live in Wales and you have experienced problems in getting a referral for your Vasculitis problems or with getting a cross-border referral, or you know someone who has, please get in touch with either John Mills or myself as soon as possible.. John is preparing a presentation on behalf of Rare Disease UK, to be held in Cardiff with the Welsh Health Department about this problem for the end of August 2013.
If you live in Wales we need your help as so... - Vasculitis UK
If you live in Wales we need your help as soon as possible please
Written by
Suzym2u
Moderator
To view profiles and participate in discussions please or .
3 Replies
•
Hi. I was living in West Wales when diagnosed with WG in 2005 and was refered to Cardiff consultants in 2008. We have now moved near to Cardiff. Our main problem was while living in the West, my trachea closed completely due to scarring caused by the WG, I already had a trache since diagnosis, so I became mute and t here was no support or budget for a communication aid. After a year of struggle we purchased a Trutone electrolarynx privately. Perhaps if we had lived in the city then, things would have been easier. Many thanks..
John_MillsVolunteer
Is it ok if we get back to you Indragon.. This might be quite useful... We are collecting evidence at the moment.
Thank you
Susan
in reply to John_Mills
Yes of course.
Not what you're looking for?
You may also like...
We are looking for your help please. Do you speak French, German or Spanish?
commitment. If you feel you can help please contact Susan Mills. susan@vasculitis.org.uk Thank you
Your help is needed - COVID19
older with rheumatic diseases, and parents of children with #rheumatic diseases to participate in a...
Your help needed again please - health care during the COVID19 pandemic
you are experiencing and which hospital you are seen.
Thank you..... this post is not for slagging...
Hi everyone I'm new here I need your help
I want to ask is if anyone else has experienced the same problem Drs only know so much , people who
Terrible long term prednisone withdrawal symptoms and possible need for disability. Please help. IGA Vasculitis HSP
on pred for 2 years. Tapered down to 5. It is getting more painful and more symptoms at each taper....