Ehlers-Danlos Syndrome.
Last updated Friday, February 18, 2005
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Management and treatment
Treatment
Treatment will vary, depending on how EDS affects you. One or more
of the following treatments and precautions may be recommended.
Because serious complications can occur in the more rare forms of
EDS, regular check-ups with specialists familiar with EDS are
recommended. Ask your doctor to describe the symptoms of any possible
complications and what to do should these occur.
Self-management
Learning how to protect your joints
will help prevent further injury, reduce pain, conserve energy and
enable you to stay as active as possible. Recognize activities that
cause joint pain and find less painful ways to move and perform tasks.
Avoid activities that cause you to overextend or "lock" your joints.
Frequent over extension of the joints may cause chronic "traumatic"
arthritis. For example, avoid leaning on or pushing off with the palms
of your hands. These movements cause fingers to hyperextend.
Prevent slips and falls at home by keeping walkways, entrances and
exits clear of toys and other objects. Don't use scatter rugs and avoid
using slippery floor polish. Toddlers and young children should be
encouraged to wear knee pads to protect their knees if they do fall.
Consider using self-help devices, such as long-handled combs and
reachers, if reaching or stretching puts your joints at risk for injury
or dislocation. Most devices can be found in hardware or variety
stores, pharmacies or medical supply shops.
How you store routinely used items can also make a difference. Are
items within easy reach? If not, rearrange storage areas and place
items at comfortable heights. If stair-climbing puts excessive strain
on your knees or hips, consider placing a ramp over the steps.
Duplicate items upstairs and downstairs to avoid frequent trips up and
down steps. Identify other ways to make your home or work area safe and
comfortable. Be creative and see what works for you.
Eye treatments
Children and adults should have regular eye exams. Nearsightedness
(myopia) is a common condition and can be corrected with prescription
glasses or contact lenses. People with EDS VI are particularly at risk
for more serious eye conditions and need to consult a doctor who has
experience treating EDS.
Vitamin C
Vitamin C (ascorbic acid) may or may not be effective in reducing
the severity of symptoms for some people with EDS VI and possibly other
types. Be sure to check with your doctor before taking supplemental
doses of vitamin C.
Sun exposure
Premature aging due to sun exposure is a risk for many people with
Ehlers-Danlos syndrome. When out-of-doors during peak daylight hours
use a sunscreen with a protection factor of 15 or above and wear long
sleeves, long pants and a wide brimmed hat.
Exercise and therapy
Joint stability may be improved through prescribed exercise
programs that strengthen the muscles. But avoid weightlifting. It puts
too much strain on your joints. In fact, any exercises that cause you
to put pressure on locked joints should be avoided. Check with your
doctor or physical therapist to learn appropriate strengthening
exercises and the proper way to do them.Surgery
People with EDS may need surgery
to correct fractures and dislocated joints. If you are scheduled for
any type of surgery be sure to tell the surgeons that you have
Ehlers-Danlos syndrome so that surgeons may choose to use staples or
tape (rather than stitches) to close wounds. Surgeons should also be
alerted to any vascular or bleeding problems.
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