Churg-Strauss meeting tidbits...

[Dirty Don]

I had my first face to face encounter with another AI victim the other nite...Churgs-Strauss patient. Not a big deal, except that I finally had someone to discuss our situations with over a soda...OK, he had a beer! AND, the big deal aside from similarities was/is that this man was dx'd with CS when he was 11 years old! He is now 56. His body is pretty beat up: boot supports, deteriorated muscles, and so on. He was one of the early 'Mayo guinea pigs', as he put it...from the clinic in Rochester. As his story went, he was 1 of 3 patients there at the time...docs decided to use cortisone on him, not so on the others...the others died eventually...he's still ticking. Now he has the effects of so many steroids over the years, but he had a sparkle in his eyes, a great attitude...he's now on similar drugs as most of us: pred most notably.

He was a joy to speak with, an inspiration to me in my limited state, and just generally I walked away with a feeling of enthusiasm & hope. A very nice man. Maybe something I can learn more from over time...sighs! Take care all & keep on keepin on!

Don

[pberggren1]

That was very nice you were able to have a nice visit like that. Does he live close to you? Maybe you could make this a regular thing.

[Dirty Don]

Nope, he live IN Minnesota, doesn't stray far from Mayo if possible, dont' blame him. But we shared email addresses, so will keep in touch. To see him in the state he is in and still have the attitude he has was just amazing. If he can do that, then I can do it too with much less of an incursion on my body at this time...just was a true joy to meet a truly tough person!

[Al]

Interesting, Don. This would make your drinking buddy one of the earliest CSS diagnosees, since it was first described in the early 1950, if I have my history correct. (This was decades before the discovery of ANCA!) The fact that he was so young at DX is interesting, as is his longevity. An inspiration, for sure!

Al

[Dirty Don]

Same here Al...I did the math...he did indicate that his first treatments were not for any AI as such, and the treatments were comprised of cortisone, not pred, obviously, thus much of the destruction to his body over these years. I took him at his word, we spoke of similar things & symptoms making me thing he's valid. Also, just sitting with the guy, it was obvious that he's endured a lot. I'll get to know him better over email, I hope. I'll keep you apprised as I learn more...I was taken a bit aback by the time issue too though I know little of these diseases then.