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EhlersDanlosSyndrome

Meet More Edsr's

- Click on their name to read their EDS/VEDS experience

When I was going through a major stress zone with hearings- custody - and SSI - I asked some in the group to tell me their experiences with EDS ( ehlers danlos syndrome and or VEDS - vascular ehlers danlos syndrome - and am adding their stories here - along with their names- I asked them if it would be ok to share and they said Yes- so if you see yours here and have changed your mind- please let me know- or if you want changes made to your writing- let me know that too- and last of all- thanks to each and everyone of you for all your help------


***BettyCammack *** BonnieHeintskill ***TJ*** LauraHague*** MaggieBuckley***

I haven't got all placed here yet- so if you wrote me one- I still will be putting it on- ( dont tell anyone I kinda put them in a folder but the folder is not very organized lol ) if you didn't send me one but would like to now add one and have me place it here as well- send it to me at moondancer@mich1.net and I'll be more than happy to place it here with the rest of ours. One never knows- it may come in handy for someone else that has EDS/VEDS.

 

Helpful Hints Regarding Family Trees and Information that is helpful for Family and some links here may help regarding filing for SSD/SSI

***FamilyHistory*** Battle for SSI*** ManagingEmotions*** Phlebitis-Thrombosis***

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Descriptions & Support Groups to Join: Read on Below-

EHLERS-DANLOS SYNDROME, TYPE IV, AUTOSOMAL DOMINANT-VASCULAR TYPE DESCRIPTION

Vascular Type EDS Description Thin translucent skin reveals the subcutaneous venous pattern, and is particularly apparent over the chest and abdomen. Facial appearance is characteristic in some affected individuals. A decrease in subcutaneous tissue, particularly in the face and extremities is evident. Minor trauma can lead to extensive bruising. Arterial/intestinal/uterine fragility or rupture commonly arise in this type of EDS. Spontaneous arterial rupture has a peak incidence in the third or fourth decade of life, but may occur earlier. Midsize arteries are commonly involved. Arterial rupture is the most common cause of sudden death. Life expectancy is shortened with a majority of individuals. Joint hypermobility is usually limited to the digits. Tendon and muscle rupture can occur. Talipes equinovarus is frequently seen at birth. Other manifestations that may be found include: acrogeria; early onset varicose veins; arteriovenous, carotid-cavernous fistula; pneumothorax/pneumohemothorax; gingival recession; complications during and after surgery. Vascular Type EDS is caused by structural defects in the proa` 1 (III) chain of collagen type III encodes by COL3A1. Inheritance: Autosomal dominant.

I have done a lot of researching to find out more information about EDS via the web and have been blessed by a recent online group that is led by;

Mr. Robert L. Heim, Jr., President

Ehlers-Danlos Syndrome

Philadelphia, PA., Internet Support for Invisible/Hidden Disabilities

Daddio5600@aol.com

http://groups.aol.com/edsphilly3?mmch_=0

Please be sure to check his site and group out - most likely- from what I have learned thus far- any information that you could possibly want or need - is readily available by Robert L. Heim himself. Thank you so much for allowing me to be a member of your wonderful group.

I am in many support groups for EDS/VEDS- and one of those groups that I am going to list here now- due to it being the main active one is the CEDA Group- Stands for Canadian Ehlers Danlos Association- it is basically a support group - via e-mails ( like a round robin - you send an e-mail and it goes to everyone on the list - including yourself )- http://health.groups.yahoo.com/group/ceda/ and For More Information about CEDA- also visit: http://www.ehlersdanlos.ca- As of August 20, 2004- there are 465 members. Category: Illnesses

Canadian Ehlers Danlos Associations' EDS listserv! This is a family and we discuss ehlers danlos syndrome here, and all things related to EDS! You will find a great deal of information shared here, including personal experiences, non-medical advice, opinions, medical news, laughter, tears. This is a large group and we tackle all topics! We welcome with open arms, all new members and encourage you to join us and wave hello!

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Below are some wonderful EDS/VEDs support groups ---- I am a member of each one listed- One can never have too much information or support.

 

Subscribe to VEDS
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Subscribe to edsprayer
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Subscribe to EhlerDanlosSyndrome
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Subscribe to EDSUSA
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Subscribe to Daddio5600
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Subscribe to ehlers-danlos-syndrome
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Page Made- August 20th- 2004

Last Revised Decmember 29th, 2004

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