Interview for EDS Awareness by Ivanhoe Broadcast NewsI

[Guest guest]

I just finished an interview with Ivanhoe Broadcast News (www.ivanhoe.com) They

are doing a feature on EDS awareness at my suggestion and will let me know when

it will be published. They will also include an interview with a doctor along

with my interview. I have no idea how it will be skewed or if they will present

an evenly balanced story, but they promised to highlight EDS this month. I am

very excited about this as I felt so badly that my surgery prevented me from

personally addressing the local school population as I had planned.

This is true.

Even those who are supposed to know about EDS don't! I am the rep for GA I

got a call from a student from our local State University asking for info. He

is taking a course in Medical Genetics and was assigned a research paper on EDS

II. This category has not existed since 1997! He was also told that the

incidence was 1: 50,000.

So you see how badly we need to get the word out. I told him to turn in a

blank paper and say the category no longer existed, but he was chicken, so I

explained the new nosology , and gave him the information he needed. If

medical genetic courses are misinforming students, what chance have we got?

Judy/Atlanta