Sunday, November 11, 2012

WASHINGTON, DC—It's nice of the Washington Times to provide some coverage to the suffering caused by Ehlers-Danlos—and good supportive commentary for caregivers:

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 People with EDS may seem preoccupied or withdrawn even when they appear to be healthy.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. 


Unfortunately, the article fails to fully discuss the potential for cardiovascular risks and complications caused by the disorder. To this, we would add the following further warnings:

1. Ehlers-Danlos Syndrome carries a high risk for stroke, aneurysm, hypotension, mitral valve prolapse, and Chiari Malformation. EDS patients should be evaluated and monitored cardiovascular complications on a regular basis. This may include annual abdominal ultrasounds to rule out the potential for abdominal aortic aneurysms. Extreme fatigue may be a sign of hypotension, which can be treated with relatively inexpensive medication.

2.  Extreme hypermobility is a blessing and a curse. Young dancers, gymnasts, and others with extreme flexibility should be evaluated for EDS, especially if there is a family history of extreme joint pain, disability, stroke, migraines, and aneurysm. Dance can be helpful therapy to strengthen the musculature of EDS patients, thereby reducing the risk of joint dislocation, however, understanding the underlying reason for hypermobility may also help to avoid injury and cardiovascular complications.

3. If diagnosed with EDS, patients and their families should ensure that all medical professionals that care for them understand their condition. EDS can seriously affect surgical procedures and outcomes. Prepared physicians can adjust for this, if they understand the underlying condition in advance.

1 comment:

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