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Marfan Syndrome

Can Diet Treatment Help?

Contents:

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  Fibrillin Genes and Marfan Syndrome

Most researchers say that Marfan syndrome (MFS) is caused by a mutation in the gene for fibrillin (specifically the fibrillin-1, or FBN1 gene). However, recent studies show that most people with Marfan syndrome (72%) have not been found to have fibrillin mutations. Recent studies also show that many people who do not have the disorder also have fibrillin mutations.

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  Marfan Syndrome and Possible Links to Nutrition

There are many symptoms of Marfan syndrome that are identical to symptoms of nutritional deficiencies.  Is this a random coincidence, or could genetic predispositions to be low in certain nutrients be factors for people with Marfan syndrome? Homocystinuria has many identical features to Marfan syndrome including the Marfanoid habitus, dislocated lenses and fibrillin abnormalities. Besides genes, environmental factors such as diet, vitamins and drugs are known to influence the course of homocystinuria. People with MFS are often treated successfully with drugs. As such, it would be highly logical to consider that in addition to genes and drugs, symptoms of Marfan syndrome, like symptoms of homocystinuria, may also be influenced by alternative medicine treatments including vitamin and/or dietary therapy.

I have received dozens of letters from desperate parents telling me that a child has some little-known disease which I have failed to mention. Almost invariably no research has been done concerning the effect of nutrition on that particular illness...To say that a disease is incurable does not mean that it cannot be cured but only that at present a cure is unknown.

Adelle Davis, writing in Let's Have Healthy Children

Aortic aneurysms are a key feature of Marfan syndrome. There are many studies linking copper deficiencies in humans and animals (turkeys, chickens, ostriches, waterfowl, rats, mice, pigs, cows and guinea pigs) to aortic aneurysms. Research has found that some animals develop aortic aneurysms because they have a genetic predisposition (not an incurable disorder) to be low in copper. Aneurysms in these animals are often reduced when they are fed a diet with sufficient copper. Interestingly, it has been noted that the symptoms of Mafan syndrome were similar to those of copper deficiency in chicks. Unfortunately, I couldn't find any studies of anyone ever actually testing people with Marfan syndrome for copper deficiencies. It would be a highly logical area to research.

Copper and MFS

"In government experiments, rats were fed diets (two to three times more deficient in copper) than the typical American diet. Researchers say that virtually everything was wrong with these animals....Many of the animals died suddenly, often from ruptured hearts."

"Copper is an essential trace mineral, and it's estimated that humans need about 2 to 3 mg per day. Numerous studies, however show that Americans eat less than half that much, a mere 1 mg per day. According to experts at the U.S. Department of Agriculture, most Americans are dangerously deficient in copper. Surveys show that only 25 percent of the population consumes 2 mg of copper per day."

Jean Carper, writing in Jean Carper's Total Nutrition Guide

Perhaps MFS, like many other genetic disorders, also has a nutritional component. The table below highlights some interesting potential links between Marfan syndrome and dietary factors, including a big section on the similarities between the disorder and copper deficiencies. With the many similarities between Marfan syndrome and nutritional deficiencies, it is unfortunate that there has not been much research in this area. Perhaps, like many other disorders once thought to be caused by genes alone, diet may also play a role in MFS.

Related Link

Federal Project Probes Environment, Genes
- "Most diseases aren't caused by a big mutation in a single gene, but by subtle differences in multiple genes, plus environmental influences." - from Yahoo! News.

 

Research on Marfans and Nutrition

"In conclusion, our data indicate an association between the severity of cardiovascular manifestations in Marfan patients and tHcy levels.........and could indicate the value of vitamin supplementation (folic acid, vitamin B6 and B12) for these patients. "

B. Giusti, M. C. Porciani, T. Brunelli, L. Evangelisti, S. Fedi, G. F. Gensini, R. Abbate, G. Sani, M. Yacoub, and G. Pepe Phenotypic variability of cardiovascular manifestations in Marfan Syndrome: Possible role of hyperhomocysteinemia and C677T MTHFR gene polymorphism Eur. Heart J., November 2, 2003; 24(22): 2038 - 2045

Perhaps not coincidentally, my children and I, who all have had a connective tissue disorder diagosis with bodily features of Marfan syndrome, all had cellular nutritional testing done recently and the one common deficiency we all had that of vitamin B12.

 

Each Symptom of MFS has a Possible Nutritional Link

 

Marfan Syndrome Symptom 

Alternative Health Treatment Links -  
See My Sections On:

Anxiety disorders, high adrenaline levels

Magnesium - Anxiety Disorders

Low Cholesterol - Anxiety Disorders

Blue sclera Pectus Excavatum
Dislocated lenses Dislocated Lenses
Keratoconus Magnesium - Keratoconus
Mitral valve prolapse

Magnesium - MVP
Mitral Valve Prolapse

Fibromyalgia Fibromyalgia Treatment
Osteopenia and Osteoporosis

Magnesium - Osteoporosis

Rachitic Skeletal Features: 
Pectus excavatum, pectus carinatum, bowed limbs, flat feet (pes planus), hypermobility, acetabuli malformations, scoliosis
Magnesium - Rachitic Skeletal Features 

Pectus Excavatum 

Scoliosis

Nutrition and Zinc, especially Zinc and Pectus Excavatum  

Attention Deficit Disorder (ADD) Magnesium (Mg)- ADD
Emphysema in nonsmokers MFS - The Similarities to Copper Deficiency 
Asthma Magnesium - Asthma
Aorta strength and aortic aneurysms MFS - Similarities to Copper Deficiency 

Magnesium (Mg) and Aorta Strength 
 

Allergies Magnesium - Allergies
Scoliosis

Alternative therapies for spinal curvature

Causes of laterally curved spines

Malar hypoplasia (underdeveloped mid face)

Micrognathia (small jaws)

Highly Arched Palate

Marfanoid Habitus

Connective Tissue Disorders: The Overlaps and Links to Nutrition
Stretch Marks (striae) Zinc
Apnea Magnesium
Muscle weakness Magnesium
Myopia (nearsightedness)

Magnesium

Zinc deficiency symptoms and zinc in connective tissue disorders

Various Eye Disorders - Glaucoma,
Retinal Detachment, Cataracts,
Macular Degeneration

Zinc deficiency symptoms and zinc in connective tissue disorders

 

Calcification of heart valves

Magnesium deficiency

Vitamin K deficiency

Nystagmus Nystagmus
TMJ Temporomandibular joint disorder (TMJ)
Neck Pain

Neck Pain Causes

and Treatments (especially for people with scoliosis)

Fibromyalgia Fibromyalgia Diet
Fibromyalgia Treatment
Eye Floaters Eye Floaters
Heart Palpitations Heart Palpitations
Migraine Headaches Migraine Headaches
Calcification of heart valves Calcium Deposits

It is interesting to note that several of the symptoms linked to Marfan syndrome such as osteoporosis, macular degeneration and calcification of heart valves have been linked to the use of anticoagulants. People with Marfan syndrome are often put on anticoagulants after some types of heart surgery. Could some of the symptoms now atributed to MFS syndrome actually be symptoms caused by the anticoagulants commonly prescribed to Marfan patients?

Here is an excerpt from an online article on new Vitamin K research that may be interesting to read for people with Marfan syndrome, since many people with MFS take anticoagulants:

"Anticoagulant drugs work by interfering with vitamin K. Therefore, people taking "blood thinners" such as warfarin or heparin should not take vitamin K. People who chronically take these drugs are, in effect, vitamin K deficient. Do such people show effects on bone and blood vessels? The answer is yes. Studies show that long-term anticoagulant users have osteoporosis and a tendency to hemorrhage. One study shows that long-term anticoagulant use doubles the risk of stroke. Occluded arteries have been documented in people taking heparin, and some researchers conclude that the drugs work no better than aspirin in preventing heart attacks. "

Other sections of this article link vitamin K deficiencies to aortic calcification, and according to Marfan experts, calcification of heart valves is a feature of Marfan syndrome. But is calcification a feature of the disorder itself, or a side effect of the anticoagulants taken by many Marfans?


  
Besides clinical symptoms, there are a variety of biochemical and genetic anomalies found in Marfan syndrome.  All of these also have possible nutritional links, too. 
 

Biochemical or Genetic Anomaly of Marfan Syndrome

Nutritional Links - 
See My Sections On:

Low urinary desmosines & Abnormal aorta elastin MFS - The Similarities to Copper Deficiency 
Hyaluronic acid abnormalities Hyaluronic acid
Fibrillin-1 mutations Fibrillin Mutations and Marfan Syndrome

 

It is almost as difficult to make a man unlearn
his errors as his knowledge.
Chalre Caleb Colton

 

 


Related sections of interest:

Links to diet in birth defects and genetic disorders.

Osteogenesis Imperfecta

Diet Help for EDS (Ehlers-Danlos Syndrome)

Pectus Excavatum Causes, FAQ, and Exercises

Could Hyaluronic Acid Help with Aging or Connective Tissue Disorders?

Wrinkled and Dry Skin - What you Eat May Make a Difference

Zinc Deficiency Symptoms

 

Selected Links:

Marfan syndrome, magnesium status and medical prevention of cardiovascular complications by hemodynamic treatments and antisense gene therapy.

Living with Marfan syndrome - a personal web page.

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