Thursday, September 18, 2008

COMBINED FEDERAL CAMPAIGN

PERMANENT # 51268
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8 comments:

Ghost Dansing said...

do you have nf?

8:32 PM
Sherry Pasquarello said...

yes, i do. i was not diagnosed until i was 46.

9:03 PM
Ghost Dansing said...

i saw your picture and didn't see any disfigurement..... but there were pictures of others too.

does it give you debilitating symptoms or is it mild?

9:06 PM
Sherry Pasquarello said...

it is actually very common and very misunderstood and not much can be done for it right now except to try to treat what comes along. it's genetic, a defect in the 17th chromosome in cases of nf1, that's what i have. nf2 is much less common.

i have had numerous medical problems from birth but just learned to work around or thru them. most people do the same no matter the problems. i'm not unique in that.

it wasn't until i was 46 and hospitialized with a severe bowel obstruction that i was diagnosed.

even a lot of doctors think that all nf patients suffer from facial or body deformities. we don't all, but many do.

i push for research money for the kids. i'm hoping something can help them someday. other than just fixing or trying to fix what goes wrong or just watching them live with disablities, pain, ridicule or death.

9:14 PM
Sherry Pasquarello said...

i have no disfigurements. but i have had a cancerous brain tumor when i was a toddler and i have some learning disablities that are fairly common for nf(wish i had known that in high school.)
i had a small tumor removed from a nerve in my legs a year before i was diagnosed but when the biopsy can back as a neurofibromatoma, the surgeon said not to worry that some people get 1 and don't have the disease and that, " you are too pretty to have the disease."


so, me, i just took him at his word and didn't thnk anything more about it til the next year when i ended up in the er and almost died from the blocked bowel.

as i said, a lot of doctors are misinformed about it.

my problems are mostly internal.

9:20 PM
Sherry Pasquarello said...

"neurofibroma" i spelled it wrong, silly me!

9:22 PM
Ghost Dansing said...

ok.... thanks for the info. truly a worthwhile cause.....

4:25 AM
Sherry Pasquarello said...

no problem. and the great bonus is, scientists feel that if they can help with nf they will also find beter ways to treat and maybe reverse cancers. neat!

8:10 AM

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