Let Me Introduce Myself

I have spent much of my life as that odd one who sometimes hit the floor in pain or sat like a pretzel or wowed the yoga class with her antics.  I did not let it stop me from doing and just thought everyone was like me and if they weren’t, I thought they were odd. Isn’t everyone in pain?

I became a teacher, went on to a masters degree in education at thirty something and finally on to a doctorate in teacher education and supervision to obtain it at 51. Late bloomer? Yes! Determined? Yes! Ignoring self when it comes to difficulty, pain, hard work? Yes! Yes! Yes!  

Finally, in July 2003 at age 59 a doctor told me I have EDS and my life began to make sense. I then found EDNF and the rest is history.  I discovered myself in its message boards, I found articles to show and educate my doctors, and I found I was not alone.

My determination is to educate: students, teachers; and now doctors and medical professionals about EDS to prevent others from late diagnosis. Without such diagnosis, we (or at least I) do the wrong things like stretching out our already loose connections to the point of complete laxity; we don’t realize we are dislocating and harm our body further;  we do the easy things -- sitting strangely, stretchy yoga, party tricks – and don’t do the things that would help like building muscle to hold us together because that isn’t as much fun.

I have now dedicated myself to the education of medical professionals, our support systems, and us. I long ago decided that my tombstone should read, “She made a difference”. I see this as my newest journey -- making a difference for those with Ehlers-Danlos syndrome.

Why did you volunteer to be a Regional Coordinator and then to become the Communications Director?

When I discovered I had EDS, I felt the need to gain information and there it was, on the website at EDNF.org. I joined, went to my first conference, and realized the need to both gain help and give it to others. When the call came for RCs, it occurred to me that EDNF needed people who were past the stage where their children took up so much of their time -- it is difficult to be the on-call Mommy and the on-call Regional Coordinator. Being at this stage of my life, I felt I could devote the time necessary and fulfill my personal mantra: to be someone who made a difference. When I had to leave my job due to EDS, I realized that I could use my skills to develop materials to benefit our membership, their families and the medical profession. As Communications Director, I can use my writing skills to increase the publications of EDNF to raise awareness and knowledge to a greater audience.

What experience did you have to bring to the party?

Though not a group leader, I assisted the leader of the group created in St. Louis at the time of my first conference. Having a PhD in teacher education and having written three books in various areas of the education experience, I knew that I could help in the drafting of materials in ways that might be different from others. I felt my teaching roles -- those of teacher of children and then of teachers and those seeking to become teachers – I had the skills to present information and hopefully encourage others to become educators regarding awareness of EDS. And, as someone diagnosed late in the game (age 59) and having struggled through all that I did due to EDS, I had the experience that lets us know that we must not give up, not let EDS get us down and not let it keep us from living and fully experiencing life to the fullest. In my new role, I am able use my writing abilities to enlarge my audience and influence to better our plight.

What do you want to achieve from the Communications Director role?

It is my hope that as Communications Director, I can instill in all with whom I deal, the realization that we can each make a difference; can bring about awareness to the medical profession, our own family, our friends and eventually gain control over our own difficulties while making progress to bettering things for our children. The Hinge and Loose Connections are now my communication tools and I believe we can truly make a difference in our future. Each of us can be empowered to make EDS a known and better understood disorder by the medical profession with all the benefit that can arise from that knowledge.