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Re: EDS as an auto-immune disease

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Em wrote:

Quick question..during my research, I've read that EDS is an A.I.

(auto-immune disease). I know I couldn't have made this info up, but

I can't find the referrence. Does anyone know of a website that

mentions it as being an A.I?

[Kathleen] response:

Myth: " Ehlers-Danlos is an auto-immune disease. "

Fact: No. An " auto-immune " disease is one that is defined as a disorder

that results from disregulation of the immune system. The presence of an

autoimmune response is signaled by the appearance of autoantibody in the

circulation. Since autoimmunity can affect any organ in the body (including

brain, skin, kidney, lungs, liver, heart, and thyroid), the clinical

expression of the disease depends upon the site affected. Virtually all

autoimmune diseases are dependent upon the production of an abnormal

population of T cells, one of the circulating white blood cells.

Ehlers-Danlos syndrome is not considered an autoimmune disease.

http://www.charityadvantage.com/Milwaukee_Ehlers-Danlos_BranchSQKUQL/fact

sandmythsaboutEDS.asp

You may have to cut and past the link, but that is where I got the info

from.

Kathleen

CM I, hydrocephalus,cervical instability, EDS.

suboccipital craniectomy and VA shunt 1990, suprasinus decompression 1998,

craniocervical fusion 1999, shunt revisions, LP shunt 2003, C5-6 fusion

2004, Lumbar reservoir., Craniocervical fusion redo 2006. Diagnosed with

OTFT 2006

http://health.groups.yahoo.com/group//

http://health.groups.yahoo.com/group/CCIparents/?yguid=124775342

http://health.groups.yahoo.com/group/CCIkids/

.

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Kathleen is right in this info - source below ect -- but I'll add

what might be CONFUSING you - is that according to statements

made " to me " =when at the NIH study of connective tissue diseases

with Dr omono and Dr Mc Donnell -- they told me they QUITE

often find folks WITH EDS also have various differant autoimmune

disease problems - some multiple autoimmune diseases ect. entwined

in the OVERALL health concerns /condtions that we can have .

I don't know if you may have read some bit on this at a web site _

OR in possibly something I've written -It could easily be confusing

to someone - but these would be SEPERATE condtions ( they believe

somehow EDS could be entwined - allow or CAUSE the autoimmune

conditon to develope = but this is currently a PART of what's being

studied now - not yet clear HOW or why . ( In some cases - they

supect the genetic mutation bits could be very close together -and

both a bit haywire for example ) - and they did mention =discuss

that it applies to MULTIPLE differant autoimmune problems ,that when

we have ONE - it IS common to see MORE than one develope in the same

person with EDS too ) .

in Paradise

>

> Quick question..during my research, I've read that EDS is an A.I.

> (auto-immune disease). I know I couldn't have made this info up,

but

> I can't find the referrence. Does anyone know of a website that

> mentions it as being an A.I?

> [Kathleen] response:

>

>

>

> Myth: " Ehlers-Danlos is an auto-immune disease. "

>

> Fact: No. An " auto-immune " disease is one that is defined as a

disorder

> that results from disregulation of the immune system. The

presence of an

> autoimmune response is signaled by the appearance of autoantibody

in the

> circulation. Since autoimmunity can affect any organ in the body

(including

> brain, skin, kidney, lungs, liver, heart, and thyroid), the

clinical

> expression of the disease depends upon the site affected.

Virtually all

> autoimmune diseases are dependent upon the production of an

abnormal

> population of T cells, one of the circulating white blood cells.

> Ehlers-Danlos syndrome is not considered an autoimmune disease.

> http://www.charityadvantage.com/Milwaukee_Ehlers-

Danlos_BranchSQKUQL/fact

> sandmythsaboutEDS.asp

>

> You may have to cut and past the link, but that is where I got

the info

> from.

>

>

>

> Kathleen

> CM I, hydrocephalus,cervical instability, EDS.

> suboccipital craniectomy and VA shunt 1990, suprasinus

decompression 1998,

> craniocervical fusion 1999, shunt revisions, LP shunt 2003, C5-6

fusion

> 2004, Lumbar reservoir., Craniocervical fusion redo 2006.

Diagnosed with

> OTFT 2006

>

>

http://health.groups.yahoo.com/group//

>

> http://health.groups.yahoo.com/group/CCIparents/?yguid=124775342

>

> http://health.groups.yahoo.com/group/CCIkids/

>

>

>

>

>

>

> .

>

>

>

>

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