Ehlers-Danlos Syndrome: Are Genes the Only Cause?

Ehlers-Danlos Syndrome:

Is Diet A Treatment?

Explores the links between EDS & fibromyalgia

Environmental and Genetic Factors in EDS and Related Connective Tissue Disorders

Welcome to my site on health, logic and hereditary connective tissue disorders. I started the research for this web site after I was diagnosed with Ehlers-Danlos syndrome, a genetic disorder with no known cure. In researching Ehlers-Danlos syndrome and related disorders, I found that much of the hereditary connective tissue disorder research is based on the premise that the various disorders are each caused by single genes unrelated to each other and unrelated to environmental factors.

After spending a lot of time researching Ehlers-Danlos syndrome, related disorders, and the field of genetics in general, I disagree with this premise. I found lots of links between EDS and environmental factors, especially nutrition. I used much of this research to improve my own condition and that of my children, and I think there is every reason to think that environmental factors may be considerations for others with Ehlers-Danlos syndrome and similar connective tissue disorders.

The concept that inherited disorders are caused by a single defective gene is no longer widely accepted in most genetic research and literature. The $60 million Environmental Genome Project is based on the concept that few disorders are caused by a single genetic or environmental event. The premise of the Environmental Genome Project, an outgrowth of the Human Genome Project, is that most disorders are in reality caused by complex sets of interactions between genetic and environmental factors.

One line of thinking in science that is currently gaining in popularity is that some diseases occur because our ancestral genes may not be the best suited for our new, modern day environments. Perhaps instead of trying to make our genes fit our environments with gene therapy, we just need to change our environment, including our diets, to fit our genes. We know from experience in disorders such as cancer, that genetic factors may increase a person's susceptibility to contracting a disorder, but that this susceptibility can be greatly reduced through appropriate dietary and other environmental modifications.

Curiously, there has been little, if any, environmental research on most inherited connective tissue disorders. However, there is no reason to think that environmental influences would not be important factors, especially since many of the individual features of connective tissue disorders, such as mitral valve prolapse, blue sclerae, pectus excavatum, dislocated lenses, aortic aneurysms and osteopenia, have each been clearly linked to nutritional deficiencies. In any case, most of the considerations in this Web site, such as reading well written nutrition books and working with your doctor to determine if you have any food allergies and/or nutritional deficiencies, are generally all healthy things to do anyway, and some may end up helping your genetic disorder symptoms, too.

My goals in putting up this Web site are:

To share the environmental links I uncovered with others who may have some of the same conditions
To distribute my theories for discussion
To encourage more research into controllable environmental factors, especially nutrition, and hereditary connective tissue disorders.

For more information on Ehlers-Danlos syndrome see The Ehlers-Danlos Foundation of New Zealand web site.

Interesting Questions and Commonalties About Hereditary Connective Tissue Disorders

Ehlers-Danlos and Related Hereditary Connective Tissue Disorder Features Include:	What do all of these disorders have in common?
Mitral valve prolapse syndrome Marfan syndrome Ehlers-Danlos syndrome Osteogenesis imperfecta Idiopathic scoliosis Stickler syndrome	A lot - including some interesting biochemical anomalies known to be heavily influenced by nutrition

Here is a partial list of overlapping features found in most of the disorders listed above:

Mitral valve prolapse
Low Bone Densities
Osteopenia
Osteoporosis
Pectus excavatum
Pectus carinatum
Fractures
Osteoarthritis
Nosebleeds
Easy Bruising
Hypermobility

Scoliosis
Poor wound healing
Blue sclera
TMJ
Hypermobility
Bowed limbs
Joint instability
Heavy menstrual periods
Keratoconus
Migraine Headaches
Fibromyalgia
Anxiety and Depression

Which raises these interesting questions -

Why do these genetic disorders have so many overlapping features?
Why do some people have more than one rare genetic disorder, or have multiple occurrences of rare genetic disorders, in their families?
Why do features like mitral valve prolapse, scoliosis and pectus deformities frequently occur together, whether they are features of genetic disorders, or as "isolated" occurrences?
Why do many cases of genetic disorders like Ehlers-Danlos and Marfan syndrome occur in people with no family history of the disorders?

If we consider the possibility that these disorders are likely to be caused by a complex set of both genetic and environmental factors, then there are quite logical answers to all of these questions.