While you're there, you might want to join APF. It's free! And they are an effective lobbying group. Free and effective! What could be better?
And, as someone else has suggested:
Remind everyone that this is a great opportunity for us to be contacting television, print, and radio media right now. Write those letters to the editors of your local paper! Let them know that the nature of the show is indicative of a desperate need for public education and awareness.
It is also the ideal time to be contacting your state and federal legislators (especially those on health and education committees) as they may have seen or heard about the segment. Let them know that this poor coverage is further evidence that additional research and education requirements are needed.
Research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS. Assuming each of them has an average of 8 friends, family and caregivers, there are nearly 500,000 people who deal with EDS on a daily basis whether they realize it or not.
Keep in mind that we do have talking points that should be common in our correspondence. These talking points should be illustrated in our personal stories.
Tip #1: Keep the message simple, to the point and concise. It is a KISS=Keep It Simple & Short.
Tip#2: Know the talking points:
1. Ehlers-Danlos Syndrome is a genetic condition that can cause disfigurement, crippling disability and early death if not diagnosed early and its symptoms managed.
2. More research is needed to facilitate early diagnosis and to develop effective treatments that will prevent death, disability and disfigurement.
3. EDS research overlaps with other segments of the population; aging, arthritis, healing (diabetes), pain and cardiovascular health.
4. The diverse EDS community is full of compelling stories; athletes, dancers, musicians, children, doctors, nurses, singers, bankers, accountants, lawyers, parents, soldiers, pilots, grandparents, friends.....
5. Published research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS.
6. It is estimated that only 10% of EDS affected individuals receive a diagnosis prior to an emergency situation that results in disfigurement, a crippling disability or premature death.
Spread the word. And write those letters! If you know of another disability that has been misrepresented in a particular episode of Medical Mysteries, why not mention that, too? Mobilize against the side show!
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2 comments:
for years i wondered what i had and now that i do know i realize that the real clowns are those who choose not to accept or undermine a condition that is close to their own genes as common neighbors. I come from a LARGE family with this condition and they all live normal lives in just about every rank of society, starting with my father who was a genius, you see the condition may affect the skin and bones and heart, but it does not affect the brain, then again maybe it does, those who are supposed to be normal are more disfigured mantally than those who have the disorder., that is what it is, not a disease.
I know what you mean. When I was growing up, my sisters and I regularly asked each other to reduce our arms and legs--though we didn't use those words. We'd just say, "My leg's out. Pull on it." What a disappointing surprise to find that outside of family, no one had any idea what I wanted them to do, and were horrified when I explained!
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