Re: new congenital scoliosis list

[Guest guest]

Great idea Carmell!

No doubt this board will be busy. I will definately refer parents your way.

HRH

new congenital scoliosis list

HI all... Connie ('s mom) and I have started agroup specifically for congenital scoliosis. The vastmajority of email lists and support boards are for avariety of scoliosis conditions. We are hoping thiswill be a good place for families to share experienceswith CONGENITAL (caused by malformed vertebrae)scoliosis. To join, visit the site:CongenitalScoliosisSupport/The list is just starting and we will be adding linksand polls dealing with congenital scoliosis.mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ ______________________________________________________Click here to donate to the Hurricane Katrina relief effort.http://store./redcross-donate3/

[Guest guest]

carmell,

i wanted to say that it's great that you are starting your own board

for congenital scoliosis. i was a lurker on the other congenital

scoliosis board

(CongenitalScoliosis/), but it

did not seem very active.

i also wanted to extend my support by letting you know that if you

need any scientific articles or anything that i can get through my

work to help parents then by all means please let me know!

deshea

> HI all... Connie ('s mom) and I have started a

> group specifically for congenital scoliosis. The vast

> majority of email lists and support boards are for a

> variety of scoliosis conditions. We are hoping this

> will be a good place for families to share experiences

> with CONGENITAL (caused by malformed vertebrae)

> scoliosis.

>

> To join, visit the site:

> CongenitalScoliosisSupport/

>

> The list is just starting and we will be adding links

> and polls dealing with congenital scoliosis.

>

>

>

> mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10,

VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant

8/01), thoracic insufficiency, rib anomalies, congenital scoliosis

(fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99),

anal stenosis, chronic constipation, horseshoe (cross-fused) kidney,

dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux

(reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia,

right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes

(reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical

artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

>

>

>

>

> ______________________________________________________

> Click here to donate to the Hurricane Katrina relief effort.

> http://store./redcross-donate3/

[Guest guest]

Carmell - I've joined the list!!! I know we aren't dealing with

congenital scoliosis - I'm just a 'list junkie'! LOL

Great news that you can share specific knowledge and support with

parents/caregivers!

Love Jacki

> Deshea,

>

> Thanks so much! I will definitely be asking for help

> with articles and such. We (Connie and I) are hoping

> it becomes a great resource for congenital scoliosis,

> since there aren't many places specifically for

> congenital scoliosis. Let me know if you have any

> suggestions.

>

> Carmell

>

>

>

> mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon

10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl

implant 8/01), thoracic insufficiency, rib anomalies, congenital

scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC

(released 4/99), anal stenosis, chronic constipation, horseshoe

(cross-fused) kidney, dbl ureter in left kidney, ureterocele

(excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial

torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97,

3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and

ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

>

> __________________________________________________

>