Ehlers-Danlos syndrome

[HysteryDiagnosis]

Know anything about it??

[kedrys]

1. No but

Ehlers Danlos National Foundation and Ehlers-Danlos Support Group do.

Rare connective tissue disease, it looks like. Incurable, unfortunately.

[HysteryDiagnosis]

4. Well, the reason I brought it up... is because I have been studying

the effect of various sugars, (exotic sugars) antioxidants, coenzymes and other nutrients against incurable disease... they can and do couter some of the genetic flaws that form these conditions and they are able to influence gene expression. When I found the "most recent" paper on antioxidants vs diabetic complications... I came across this, it is new, it is real, and it needs to be spread around... that' all.

Then there is this ----> http://www.google.com/search?hl=en&q=Ehlers-Danlos+syndrome+glyconutrients

Here is the paper from the NIH.


1: Med Hypotheses. 2005;64(2):279-83. Related Articles, Links


A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements.

Mantle D, Wilkins RM, Preedy V.

Pharma Nord (UK), Telford Court, Morpeth, Northumberland NE61 2DB, UK. [e-mail]

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.

PMID: 15607555

[kedrys]

5. That's very interesting

I'm encouraged that scientists are taking this tack to try and manage the disease, if not curing it outright, using nutritional supplements. In my previous life as a lab rat, our team acquired many important insights into the development of metastatic disease by studying normal wound healing, which involves many of the same metabolic pathways, hormones, and enzymes. Among other studies, we published extensively on the similar role of transferrin in wound healing and angiogenesis in primary and metastatic cancer.

Considering we're looking here at a broad collagen abnormality, which can also be associated with other syndromes (including nutritional deficiencies), it looks like the PharmaNord researchers are on the right track. Thanks for sharing! :hi:

[HysteryDiagnosis]

6. The sooner these concepts become common knowledge, the

sooner the rates of cancer, diabetes, arthritis, scleroderma, sjogren's syndrome, heart disease and dozens of others will be lessened. There are at least 60 highly prevalent conditions that have as a common denomenator, (ROS, or higher than normal levels of pro oxidant molecules)

If you want to know what helps with metastatic conditions... search for glyconutrients.

[movonne]

2. Never heard of it, but interested in knowing ....

[MADem]

3. Now I do

http://www.ednf.org/whatiseds.html

What is Ehlers-Danlos Syndrome?
Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Ehlers–Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular(joint) hypermobility, skin extensibility and tissue fragility.There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.Each type of EDS is a distinct disorder that "runs true"in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

You got me curious, so I looked it up. Never heard of it before this.

[kestrel91316]

7. I have had a few patients with it ...................

I am a cat vet and I think I have seen a total of 3 cases in the past 14 years. Two of those were siblings (littermates). If I am not mistaken it is known to be genetic in origin. It is not due to a nutritional deficiency primarily. The collagen in the connective tissue is very disorganized so it confers no dtrength.

[HysteryDiagnosis]

8. A thought..... or two from someone who has been there.....

http://www.ctds.info/ehlers_danlos_diet.html

Overview - What My Basic Problems Have Been

I've been working with a nutrition oriented doctors and a nutritionist this last year or so, and I must say I've learned more about what's really been wrong with me in the last couple of years than I did in the previous four decades of my life. I was helpful to finally get diagnosed with Ehlers-Danlos syndrome because it provided a rational link for all of my diverse symptoms, but the diagnosis itself didn't help me to improve my health since EDS is considered by most doctors to be an inherited genetic disorder with no known cure.

Bit by bit, I've been assembling pieces of information about my health problems, researching nutrition and lately everything has been starting to all fit together and make sense. I figured out on my own that I probably had deficiencies of zinc, magnesium and vitamin K. I had a lot of symptoms linked to deficiencies of these nutrients that went away when I improved my diet. The nutritional testing the conventional medical doctors did always showed up that I had no nutritional deficiencies, which never made any sense, since it seemed like I must have some based on my symptoms.

However, when I switched to a nutrition oriented doctor who did the more sensitive cellular kind of nutritional testing, I found out I had B12 and biotin deficiencies, which made a lot of sense, based on my health problems. Next I had allergy testing which showed I was allergic to dairy products, yeast, mold and vinegar. The new doctor I started seeing told me I may have a yeast overgrowth because of my coated tongue. Then, through my own research, I found out that biotin deficiencies were common problems in people who had systemic type yeast infections, and that biotin was one of the treatments for systemic yeast infections.

So now everything is starting to make sense of what has been wrong with me all of these years. Nutritional deficiencies caused my body to be unable to activate the right enzymes needed to digest some foods, especially milk. Undigested, fermenting food in my stomach caused allergic reactions and irritable bowel problems. (See my related section on IBS Diet). It also caused me to have an intestinal environment that was overrun with yeast and harmful bacteria, and lacking in the beneficial bacteria needed to synthesize nutrients like vitamin K and the B vitamins, especially B12 and biotin.

The vitamin K deficiencies I had kept my blood from clotting, which is why I've always had so many bleeding problems, including the heavy periods and nosebleeds. Magnesium could not be absorbed properly without the B vitamins it needed as co-factors, which led to magnesium deficiencies, and so on and so on. I could write volumes of how one of my problems probably cascaded into another, but I think you get the idea. I may have had a genetic predisposition to have a connective tissue disorder, but clearly it wasn't only due to genes. If it were only genes, I wouldn't have gotten so much healthier just from changing my diet.

[kestrel91316]

9. Ehlers-Danlos is easy to diagnose in animals (if the vet is thinking) ....

The clinical appearance is pretty unmistakable, and if in doubt a skin biopsy is diagnostic. Nutrition is not a factor in the disease AFAIK. There is no treatment.

The cats I saw it in were abnormal from kittenhood and ate the same high-quality diet as other cats without it, so diet was not a factor.

[HysteryDiagnosis]

10. The article I posted did not say anything about a high quality diet,

it did however mention dosing with antioxidant supplements, co-enzymes and other nutrients at levels that cannot be achieved through any diet.

For example, if you wanted to get enough lutein to make a difference in oh say macular degeneration, you could not eat 100 pounds of spinach a day... but you could consume 30mg of lutein either in liquid form or pill form. Sorry to say, but that is just the way it is.