If you live in Wales we need your help as soon as possible please

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.

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..

  • Is it ok if we get back to you Indragon.. This might be quite useful... We are collecting evidence at the moment.

    Thank you


  • Yes of course.

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