What Is Ehlers-Danlos Syndrome?
It is a array of multiple hereditary disorders. These disorders usually effect the blood vessels, joints, connective tissue, and skin. Ehlers-Danlos Syndrome typically causes overly flexible or loose joints, thin, fragile, and stretchy skin, and fatty lumps at the trigger points. When the condition is severe it effects the uterus, intestines, walls of the blood vessels and is called Vascular Ehlers-Danlos. Sometimes Ehlers-Danlos and other connective tissue diseases negatively effect the other systems of the body. Pain is a major characteristic of this condition. People with this condition may have pain related to dislocation of joints, easy tearing of the skin, and abnormal curvature of the spine. Other symptoms include increased susceptibility to skin wounds, exaggerated motion in joints, easy bruising, stomach issues, muscle pain and fatigue, and problems with heart valves. Ehlers-Danlos syndrome is considered a genetic disorder that is passed down or inherited and is caused by a chromosome defect that effects collagen.
- Eat a healthy whole food, raw, organic diet
- Consider juicing to alleviate digestive disorders
- Include Yogurt and Kefir to increase good intestinal bacteria
- Include Sauerkraut, Kimchi, Miso, and/or Pickles for their probiotic properties
- Consider taking electrolyte tablets with water (staying well hydrated is vital)
- Avoid Sugar, except naturally occurring sugars like Honey, Molasses, Coconut
- Sugar, Cane Sugar, etc. Naturally occurring sugars do not include Stevia or Agave
- Eat a Gluten Free Diet
- Yoga and stretching to tighten and realign body and relieve pain.
- Walking, swimming, tai chi, recreational biking, using an elliptical machine, or a stationary bike. Article on exercise Here.
- Avoid contact sports, weightlifting, and other activities that may have a increased risk of injury.
- Do exercises that minimize stress on your hips, knees and ankles.
- Good Multi-Vitamin with Minerals (A good high quality supplement, with easily absorbable nutrients, THRIVE by Le-Vel HERE .
- Probiotics and Prebiotic
- Aloe Vera
- Hyaluronic Acid
- Apple Cider Vinegar with Honey
- Vitamin D
- Omega 3 Fatty Acids (a good vegetarian Omega 3 is Flaxseed Oil )
- Protect your jaw joint, avoid chewing gum, hard rolls and ice. Take breaks during dental work to close your jaw.
- Try not to overextend or lock your joints, as this can lead to chronic arthritis. Article on Natural Arthritis Treatment HERE.
- Avoid playing reeded wind or brass instruments or you could collapsed a lung or increased pressure in the brain.
- Playing violin, viola or piano would be safer options and would take advantage of the increased flexibility of your hands.
- Avoid taking to many NASID (Advil, Motrin, Naproxen, etc) as they increase the possibility of stomach ulcers and bleeding. Article on Natural Pain Relief HERE.
- Pure CBD Oil may be a good alternative therapy for Pain management and overall wellness. (High quality CBD Oil For more Information or to place an order go HERE.
Coping and Support:
Learn everything you can about Ehlers-Danlos syndrome to help you take control of your condition. Find a doctor who’s experienced in the management of the disorder. Explain your condition to family, friends and your employer. Ask your employer for any accommodations that you feel will make a work day easier on you. It is vitally important to have the support of family and friends who are positive and caring.
It also may help to talk to a counselor or clergy member.
Many with Ehlers-Danlos syndrome can benefit from seeing a psychologist or social worker, especially when first diagnosed to help get through the grieving process.
Support groups, either online or in person, help people share common experiences and help share treatment suggestions and encouragement.
- Try to live a relatively normal life, although there may be restrictions to your level of physical activity.
- Some patients with Ehlers-Danlos syndrome develop osteoporosis, arthritis, gum and dental disease.
- Some people with Ehlers-Danlos syndrome may have breathing problems. This is especially evident if they also suffer from from scoliosis (an abnormal sideways curvature of the spine) or kyphosis (forward curvature of the spine) that is bad enough to press on the lungs and flex the windpipe.
- Ehlers-Danlos syndrome patients often have mild-to-severe visual impairment, such as nearsightedness that can be corrected with glasses or contact lenses.
- Eye problems can include nearsightedness, glaucoma (increased pressure in the eye), discoloration of the whites of the eyes, and a detached retina, which occurs when the retina is pulled away from its normal position in the back of the eye.
- Collagen replacement therapy can help build up collagen levels in the body.
- However, it has not been accepted as a treatment for arthritis yet.
- It is a must to practice good preventive dental care, including flossing, brushing teeth, and visits to the dentist. Enlarged gums can be reduced by a procedure called gingivectomy, which removes and reshapes loose, diseased gum tissue to remove pockets between the teeth and gums.
- Physical therapy that includes a exercise program to strengthen the muscles, which in turn will help stabilize the joints.
- Avoid activities that cause locking or overextension of joints, and create a safe environment that may include placing nonslip pads under rugs, wearing protective gear such as knee pads and elbow pads, and using adaptive equipment to help with daily activities. You should avoid excessive sun exposure, which may worsen skin conditions. Apply high SPF sunscreen whenever going out.
Helping Children Cope:
If you have a child with Ehlers-Danlos syndrome, consider these suggestions to help your child cope:
- Maintain normalcy as much as possible. Treat your child like other children, don’t make them feel different or fragile. Ask others in your child’s life ( i.e. grandparents, aunts, uncles, teachers) to do the same.
- Allow your child to express his or her feelings about Ehlers-Danlos syndrome.
- Being angry sometimes is okay.
- Make sure others know about your child’s condition.
- Go over with them appropriate skills in the event of a fall or injury.
- Encourage your child to participate in physical activities as much as possible.
- Discourage contact sports while encouraging non-weight-bearing activities, such as swimming.
- Check with your child’s doctor or physical therapist for more recommendations.
People with this condition should be regularly seen by an orthopedist, ophthalmologist, physician, and dermatologist, depending your individual needs.
DISCLAIMER: The information here is NOT medical advice. Do not institute any changes in your current health programs without consulting your Medical provider. For medical advice please consult your private physician or preferred health service provider.
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