Rare Disease Day update

[Guest guest]

I was diagnosed with Achalasia in 1998 after a very fast onset of symptoms.

 Immediately following my diagnosis (literally less than 2 weeks), I was in the

hospital due to dehydration and the surgeon and GI doc both thought my only

option would be myotomy, as I was not able to keep even water down at that

point.  I had lost over 40 pounds in less than 2 1/2 months.  My myotomy was

performed July 2, 1998 and I have had to have dilatations at least every 12

months in order to keep being able to eat.  Another myo looks to be in my very

near future (after the birth of my son, according to my surgeon), but times have

changed, and thanks to this group, I'm actually looking forward to a laproscopic

surgery

I joined the group last fall when things were really looking crappy on the

achalasia front, and I have to say that being a member has given me so much

hope.  I remember immediately following my myotomy, eating my moms devilled eggs

and how absolutely ecstatic I was to swallow with no worries.  Even though today

that isn't quite the case, I know that I will be able to do it again soon, and

the pleasure that we get from swallowing will be back

Thank you all for all the inspiration and information (notan, you're a god )

and I have to say that without you all, I would still feel like quite the

outsider, instead of the person that I am, feeling grateful to be a part of such

a select group of strong individuals who deal with their rare disease in very

strong ways.  

kim in canada