Re: Genetics may cure us all

[Guest guest]

,

Thank you so much for your kind and positive words. iT's so funny that you mentioned a genetic study because they are presently conducting one on me and my parents.

The docs think the crohn's is the link to my lung problems and anemia problems. i was diagnosed with myelodysplasia but two hematologists don't believe i have that either.

but what i find unusual with the crohn's is how can i have it but all the tests are normal and show no signs of the disease. can that be possible? i was definitely diagnosed with Rectocele. but the surgery they want to do is a colostomy, which i am very hesitant about. most of my "crohn's" is affecting me vaginally and has made my way of life extremely difficult, beyond what words can describe. i'm just hoping that these surgeries will improve my way of life and help me feel somewhat normal. we are shooting for a november date but here in PR things are very very slow and laid back which i am not at all used to. ask anything u wish to know i am here at yr disposal. lol

[Guest guest]

Dear ,

Is your surgery you need due to the Crohn's?

I find it very interesting that you have both lung and Crohn's

disorders with EN. Most of us have lung problems with sarcoidosis or

the intestional problems with Crohn's or are idiopathic like me and

have neither. But even those who have neither usually have arthritis

aches and pains. You seem to have so many things going on at once. I

would think a study of your genes would shed a lot of light on EN and

the related disorders if it could be compared to someone like me who

for some reason has escaped all but the lumps of EN for the past 36

years.

I keep hoping a geneticist will want to do this type of work to help

a family members and will get busy studying us. Once the defective

genes are identified, they can work on fixing them. :-)

You are still a very young woman! That is wonderful! The cure may well

be discovered in your lifetime.

Please let us know when you schedule the surgery. Many of us including

myself believe in the power of prayer.

Love,