Daughter diagnosed with EDS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Daughter diagnosed with EDS

Postby 3bdogs » Fri Apr 27, 2012 4:52 am

My daughter was recently diagnosed with EDS after year and half of doctor visits, hospital time and many, many tests. Can someone tell me where is the best place to get help for EDS. We live in Ontario, Canada, but we'll travel anywhere in North America to get the best possible help. Where do we find out about clinical trials?


In advance my Wife and I would appreciate any help,


Thank you,

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Re: Daughter diagnosed with EDS

Postby Cece » Fri Apr 27, 2012 11:32 am

Ehler-Danos syndrome?
There are some members here who have Ehler-Danos and MS. I am sorry that your daughter has EDS, and I hope you are able to find the right doctor or medications for her.
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Re: Daughter diagnosed with EDS

Postby 3bdogs » Fri Apr 27, 2012 12:01 pm

yes she has been diagnosed with Ehler-Danos syndrome, I was hoping find info. on where the best place be to get help?
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Re: Daughter diagnosed with EDS

Postby PointsNorth » Fri Apr 27, 2012 3:19 pm

3dogs,

Perhaps contacting Dr. Diana Driscoll might be a start? She visits here sometimes. Her website is www.prettyill.com. She has EDS along with one or more of her children. Let us know if this is helpful.

Best, PN
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Re: Daughter diagnosed with EDS

Postby Cece » Fri Apr 27, 2012 7:42 pm

In this forum we mostly discuss CCSVI, a condition of outflow obstructions of the jugular and azygous veins, commonly associated with multiple sclerosis. We're more CCSVI experts than EDS experts. But here is a page of the clinical trials currently underway for Ehlers-Danlos. It might be a place to start. http://clinicaltrials.gov/ct2/results?t ... ers+danlos
and a popular UK Ehlers-Danlos forum: http://www.ehlers-danlos.org/forum/viewforum.php?f=16
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Re: Daughter diagnosed with EDS

Postby 3bdogs » Sat Apr 28, 2012 5:30 am

thank you
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Re: Daughter diagnosed with EDS

Postby jimmylegs » Sat Apr 28, 2012 6:05 am

you may find this Med Hypotheses article interesting:

A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements
http://www.ncbi.nlm.nih.gov/pubmed/15607555
Ehlers-Danlos syndrome is a rare disorder, comprising a group of related inherited disorders of connective tissue, resulting from underlying abnormalities in the synthesis and metabolism of collagen. This proposal is specifically concerned with Ehlers-Danlos syndrome classic type (formerly Types I-III), which is characterized by joint hypermobility and susceptibility to injury/arthritis, skin and vascular problems (including easy bruising, bleeding, varicose veins and poor tissue healing), cardiac mitral valve prolapse, musculo-skeletal problems (myopathy, myalgia, spinal scoliosis, osteoporosis), and susceptibility to periodontitis. No treatment is currently available for this disorder. The novel aspect of this proposal is based on: (i) increasing scientific evidence that nutrition may be a major factor in the pathogenesis of many disorders once thought to result from defective genes alone; (ii) the recognition that many of the symptoms associated with Ehlers-Danlos syndrome are also characteristic of nutritional deficiencies; (iii) the synergistic action within the body of appropriate combinations of nutritional supplements in promoting normal tissue function. We therefore hypothesize that the symptoms associated with Ehlers-Danlos syndrome may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements, comprising calcium, carnitine, coenzyme Q(10), glucosamine, magnesium, methyl sulphonyl methane, pycnogenol, silica, vitamin C, and vitamin K, at dosages which have previously been demonstrated to be effective against the above symptoms in other disorders.
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Re: Daughter diagnosed with EDS

Postby jimmylegs » Sat Apr 28, 2012 6:10 am

and this
http://www.ctds.info/ehlers_danlos_diet.html
(although i would caution you re the elimination diets section that re the sensitivities noted i would be taking a very hard look at zinc status)
i can help you with nutrition - it's all the same whatever the disease, you just find out how your disease of interest might be different nutritionally from healthy people, and then aim for healthy :)
pm me if you like
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Re: Daughter diagnosed with EDS

Postby silverbirch » Mon Apr 30, 2012 10:08 am

The investigators propose that evidence of chronic cerebrospinal venous insufficiency (CCSVI) may be evident in the vasculature of the fundus. The investigators will be examining fundi of multiple sclerosis patients and Ehlers-Danlos patients to see if evidence of CCSVI can be found in these patients having high risk for CCSVI. The investigators will read the fundus photos, compared to age-matched normals in a "blind" fashion.

Condition
Ehlers-Danlos Syndrome
Multiple Sclerosis

If you type ccsvi syndrome into the clinicaltrial CECE gave you

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