A defining moment

You know what?  I was diagnosed with cystinuria in 1994.  In 2000 I was diagnosed with CIDP.  So technically I have suffered from those diseases for 18 and 12 years respectively.  In that time, aside from my brother (who also suffers from cystinuria) I have not met one other person with either of the illnesses that I have.  I guess that is one of the reasons that they both fall into the category of rare diseases.

But that all changed last Wednesday when I met Keith.  Keith is a great bloke who has just finished going through the stem cell transplant process for CIDP and is currently on his way home for a little r and r.  His story is quite compelling.  He was in the airforce, and about 9 years ago in the post 9/11 era anthrax was all the scare.  As an enlisted man he was made to have the vaccine, which probably caused his CIDP.

Meeting someone for the very first time that had the same disease that I did was as the title suggests, a defining moment.  Having a rare disease can be a really lonely and scary experience.  And although I have conversed with many fellow sufferers on the internet, there is something about meeting someone with the same disease as you that makes you feel a little less alone and makes the disease feel a little less scary.

Keith and I had a good chat about a lot of things from our backgrounds to the disease we share.  What was really great for me was to talk to him about his experience with his SCT, although I do think that some of it may be a little unrealistic as I got the impression that Keith breezed through the process much easier than most people in the program.  Still, it gave me a great deal of confidence.

Well Keith, it was a real pleasure meeting you.  Best of luck with the recovery, I look forward to staying in touch and seeing how you are doing.  I was thinking too, if you are struggling to find something to do in your post CIDP life, maybe you could try for a spot in the US team to the London olympics;)

Until next time everyone, stay well:)