Recommending a book on what it’s like to live with a chronic rare condition

[Main1234]

If people are interested the Times recommend a book by Ben Watt “Patient” he was diagnosed with EGPA in 1992.

[citygirl1234]

Thanks for the recommendation!

Jane Edwards’s Chronic Illness - Learning to Live behind my Smile is also a really good read. Jane has GPA.

[Sparkypatrick]

He's also worth a follow on Twitter, especially if you have an interest in birds or protecting our waterways.

[Sparkypatrick]

Another book I found useful: Coping with Prednisone, by Eugenia Zukerman.

[John_Mills Volunteer]

I have read Ben’s book it makes very interesting reading. We were disappointed when he was asked to speak at a vasculitis conference a few years ago, he sadly declined.

[Main1234 in reply to John_Mills]

That’s such a shame John wonder what his reasons were. Did he say ? Maybe he does not like to be reminded he has vasculitis although he wrote the book.

[John_Mills Volunteer]

I have no idea why he declined but there was a conference to organise and there was little time to find another speaker…

[Main1234 in reply to John_Mills]

Such a shame he was not able to speak at the conference. Wonder when we will be able to attend another one.