Doug Wilson .... EDS ????
Did you ever find out about EDS?
Sorry to have been so long in replying. I have been hiding in the dark. (migraine headache)
Well I can tell you about how Ehler-Danlos syndrome effects my daughter and myself.
EDS is defective collagen. It is the glue that holds the body together. Our skin will not hold stitches. ALL of the joints in our bodies will dislocate with no stress, just reaching for a drink can case a week of pain. The joints get loose and floppy. Imagine spraining an ankle and having it never get better, that is us. We have a huge list of things we should not do, but we try them anyway just to see if we still get hurt trying. [8D]
Eds even messes with our hearts, I have SVT I may spell this wrong ... SupraVentricularTachycardia ... That is a big word. I also get to deal with palpatations, fun times when they both hit. Can make ya pass out. My shoulders will dislocate when I relax, makes people kida squeamish being around me. My knees, hips, ankles, wrists, fingers, toes, hips and even my jaw come out of socket all the time. Some times they just come partway out... (sublxations) when this happens the pain is still something to scream about. On the good days the wife and my helper that comes out can reduce the joints. On a bad day I have to go to the ER and get some professional help. [:)] My wife and helper are cuter then the ER Dr's so I dont go if I dont have to. To be honest my biggest fear is my neck, I have been so lucky with it, I have had a dislocation at the c-3, c-4 vert. several times and have yet to have any spinal cord problems. Bad thing is I can cough and the vert will sublux and the pain is ungodly. No way for me to describe what that is like.
My daughter and I are Hypermobile, type3 EDS. If you have any questions feel free to ask.
Sorry to have been so long in replying. I have been hiding in the dark. (migraine headache)
Well I can tell you about how Ehler-Danlos syndrome effects my daughter and myself.
EDS is defective collagen. It is the glue that holds the body together. Our skin will not hold stitches. ALL of the joints in our bodies will dislocate with no stress, just reaching for a drink can case a week of pain. The joints get loose and floppy. Imagine spraining an ankle and having it never get better, that is us. We have a huge list of things we should not do, but we try them anyway just to see if we still get hurt trying. [8D]
Eds even messes with our hearts, I have SVT I may spell this wrong ... SupraVentricularTachycardia ... That is a big word. I also get to deal with palpatations, fun times when they both hit. Can make ya pass out. My shoulders will dislocate when I relax, makes people kida squeamish being around me. My knees, hips, ankles, wrists, fingers, toes, hips and even my jaw come out of socket all the time. Some times they just come partway out... (sublxations) when this happens the pain is still something to scream about. On the good days the wife and my helper that comes out can reduce the joints. On a bad day I have to go to the ER and get some professional help. [:)] My wife and helper are cuter then the ER Dr's so I dont go if I dont have to. To be honest my biggest fear is my neck, I have been so lucky with it, I have had a dislocation at the c-3, c-4 vert. several times and have yet to have any spinal cord problems. Bad thing is I can cough and the vert will sublux and the pain is ungodly. No way for me to describe what that is like.
My daughter and I are Hypermobile, type3 EDS. If you have any questions feel free to ask.
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Dave,
I had never heard of EDS until you posted it on your "annoy" thread.
God bless you and your daughter. Hope you continue to feel better.
General Discussion
Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders characterized by defects of the major structural protein in the body (collagen). Collagen, a tough, fibrous protein, plays an essential role in holding together, strengthening, and providing elasticity to bodily cells and tissues. Due to defects of collagen, primary EDS symptoms and findings include abnormally flexible, loose joints (articular hypermobility) that may easily become dislocated; unusually loose, thin, stretchy (elastic) skin; and excessive fragility of the skin, blood vessels, and other bodily tissues and membranes.
The different types of EDS were originally categorized in a classification system that used Roman numerals (e.g., EDS I to EDS XI), based upon each form's associated symptoms and findings (clinical evidence) and underlying cause. A revised, simplified classification system (revised nosology) has since been described in the medical literature that categorizes EDS into six major subtypes, based upon clinical evidence, underlying biochemical defects, and mode of inheritance.
Each subtype of EDS is a distinct hereditary disorder that may affect individuals within certain families (kindreds). In other words, parents with one subtype of EDS will not have children with another EDS subtype. Depending upon the specific subtype present, Ehlers-Danlos syndrome is usually transmitted as an autosomal dominant or autosomal recessive trait.
Resources
Ehlers-Danlos National Foundation (EDNF)
3200 Wilshire Blvd.
Suite 1601
South Tower
Los Angeles, CA 90010
USA
Tel: 2133683800
Fax: 2134270057
Tel: 8009562902
Email: staff@ednf.org
Internet: http://www.ednf.org
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: 3014954484
Fax: 3017186366
Tel: 8772264267
TDD: 3015652966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov0 -
Dave,
No one had replied to me, until now.
If I can ever do anything for you or your Daughter, call or email me: 503-843-2020 or ThunderboltRanch@msn.com
It would be a priviledge to be able to aid y'all in some way.
Very sincerely,
Doug0
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