Hi from Sarabeth

[Guest guest]

Hey guys - I just wanted to check on my CHARGE Friends - we are busy

here - trying to adjust to a new normal.

I did read something about detached retinas - I was wondering if that

was common in CHARGE - I actually had a detached retina when I was 20

years old - with no known cause. I am beginning to wonder if I might

have had the gene mutation first? Just a random thought - any ideas?

Well smiles and hugs to everyone!

Sarabeth

[Guest guest]

Sarabeth,

Retinal detachments are relatively common in the general population--for

people who have normal, healthy retinas the incidence is no higher than 0.5%

(compare that to 1 in 9-11,000 for CHARGE). Having retinal " defects, " which in

addition to colobomas, also includes lots of different causes such as areas of

thinning, points of adhesion between the retina and vitreous gel in the center

of the eye, significant scarring, fluid accumulation beneath the retina, or an

actual break in the retina all increase the likelyhood of a retinal detachment.

I think in my practice, I've seen more people with " idiopathic " retinal

detachments than detachments secondary to any retinal problem. But that's just

me...the statisics say otherwise.

I'm sure that Meg will chime in here, but it is extremely unlikely that you or

your husband has a mutation in the CHARGE gene(s) that you passed on to your

daughter. The mutation was just something that happened, and it wasn't or isn't

anyone's fault. I remember shortly after my son was born (we got the CHARGE

diagnosis within the first 2 weeks) going through my & my husband's past

history, searching for some indication that maybe we had undiagnosed CHARGE

syndrome. And after that trying to think of all the " wrong " things I had done

that could have caused CHARGE in my son. I think it's a pretty normal thing

that most parents go through.

(mom to Evan, 19 months and an optometrist)

Sarabeth wrote:

Hey guys - I just wanted to check on my CHARGE Friends - we are busy

here - trying to adjust to a new normal.

I did read something about detached retinas - I was wondering if that

was common in CHARGE - I actually had a detached retina when I was 20

years old - with no known cause. I am beginning to wonder if I might

have had the gene mutation first? Just a random thought - any ideas?

Well smiles and hugs to everyone!

Sarabeth

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