WASHINGTON October 30, 2012 - People with chronic physical illnesses not only face the symptoms of their disease daily, but also must manage the mental and emotional ramifications of having perpetual symptoms. This is true of people diagnosed with Ehlers-Danlos syndrome (EDS), an illness you may be unaware of.
Most of us walk around assuming our ball joints will remain in their sockets, and that if our skin is cut it will heal adequately in a few days. Not all people can make these assumptions. If a person with EDS says, “My bones are rattling,” they mean it.
EDS is a group of conditions that affect connective tissue in the body. It is an inherited disease that results in stretchy skin, fragile body tissue, and loose joints. Genetic alterations weaken or lower the body’s collagen supply, and collagen is a primary ingredient of our ligaments, tendons, bones, cartilage, skin, blood vessels, our spine, and the gut.
Types of Ehlers-Danlos Syndrome
Classical EDS: symptoms are velvety, stretchy, elastic, and fragile skin; loose and very flexible joints.
Hypermobility EDS: symptoms are noticeably loose, flexible joints that can be painful, especially after exertion; the skin is less stretchy but bruises easily. This is the most common EDS type.
Vascular EDS: symptoms are weakened, fragile blood vessels that can easily burst, and transparent skin; this is the most severe type of EDS.
Kyphoscoliotic EDS: the defining symptom is an extremely curved spine.
Arthrochalasia EDS: symptoms are fragile skin, short stature, and easily dislocated joints.
Dermatospraxis EDS: symptoms are wrinkly, doughy, extremely fragile skin that folds and sags; this form of EDS is more rare.
Periodontal EDS: the symptoms are similar to classical EDS, but the gums are particularly fragile.
Living With the Symptoms
The tendons, ligaments, and joint tissues in EDS patients are prone to tearing and over-stretching so their limbs may have inadequate support and be floppy. Those with vascular EDS are at constant risk of internal bleeding since their blood vessels, lung and lower intestine linings are easily torn.
Loose or hyper-mobile joints may be highly unstable, dislocate easily, and possibly become disabling. Joints can be extremely painful and necessitate the continuous use of pain medications. Fragile EDS skin bruises easily, is prone to splitting, slow to heal, and may heal improperly leaving wide scars or papery skin.
Severe symptoms include brittle bones, excruciating joint pain, spinal deformities, bowel problems such as irritable bowel syndrome, and nerve disorders. There are also difficulties with conceiving and giving birth.
Treatment involves monitoring activity and utilizing support groups. Joint supports (braces), wheelchairs, scooters, and pain medication may be necessary. Some people have mild EDS and aside from fantastically flexible joints or super-stretchy skin, their activities are not limited.
Five Considerations for Supporting People with EDS
1. People with EDS may seem preoccupied or withdrawn even when they appear to be healthy. The introspection might result from fearful anticipation about what the future holds, from managing pain, or having to be careful about all their movements. They may be exhausted and recovering from exertion.
2. As do most of us when our activity is limited, people with EDS experience anger. Since EDS is not curable, the anger is something they must learn to manage. The least the rest of us can do is avoid annoying them further by refraining from telling them what they need or how they might cure themselves.
Those who live daily with EDS symptoms know what they need and what to avoid. For example, getting out of the house and sitting in a park might seem like a great idea to you, but the effort can exacerbate EDS symptoms and bring your friend to a point of exhaustion. When having a bad day they will know enough to stay home.
3. Nonetheless, those with EDS like being invited to go out with their friends. Even if they are not up to accepting the invitation it is important to feel included. If an activity is one they cannot participate in having an option of going along to watch will be appreciated.
4. People with EDS can look healthy even when fatigued or in pain, and their stamina changes from one minute to the next. Activities enjoyed last week can be impossible this week, and sometimes they must cancel plans at the last minute.
5. No one likes being told how they should feel, or that someone else knows how they feel. That is annoying no matter what your health status, but extra grating when you are ill and hear it frequently. Support and understanding are what is welcome.
Ehlers-Danlos syndrome: http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx
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