Re: Ray - pathology results,

[Guest guest]

Hi ,

 

You mention you could try to get a hand on your pathology results. Would you try

doing that for Dr. Gockel in Germany as well? She is researching the cause of

achalasia and therefore she needs pathology tests of removed achalasian

esophaguses. She has got the results of 12 e. that she removed herself and she

got the result of mine too. Each and every report could help. If you need to get

in touch with her please do through: gockel@... .

 

Love,

Isabella

Ray

Wow- I got teary thinking that someone was really interested in working

on a real cure for us. Sometimes it does feel like being the 'red-

headed step child' having A. There are just not enough of us in enough

concentrations to really get work done (compared to say, cancer,

parkinsons and the like)

Please ask your Mr. Pastrich (sp?) what we can do to help. I'm sure

some people would be willing to participate in human trials (I would if

I still had an E) but I'm guessing that most of us would be happy to at

least contribute our medical histories and records, etc. I know that I

even had my E sent for a pathology workup after my -ectomy - I'd be

glad to get those records as well. So I guess the simple question is -

what can we, as a group of over 1700+ members do to help him? If

nothing else, he certainly is not going to find one concentrated source

of people with A anywhere else!!

I'll be keeping watch to hear about anything else going on with this.

It's very exciting!

- in NC