Sunday, June 10, 2007

Help Spread Awareness of Ehlers-Danlos Syndrome (EDS)

Everyone MUST Get Involved

Please help spread the word. This is your opportunity to have a direct affect on the quality of life for at least 50,000 known people in this country alone, and countless others throughout the world. (Yes, this post will rarely be updated, but the information in this blog is still relevant and WE NEED YOUR HELP. Thanks!)

We with EDS are impacted every moment of our lives and can benefit from your help.

Download this Awareness Brochure:

Use this with the Sports Poster downloadable here: to educate yourself, your doctors, your children's schools, your gym and community centers about EDS and how it is diagnosed. (Every facility, trainer, doctor, school, teacher you give these materials to creates more EDS-aware resources for those affected by EDS. Share your newly created resources on

The only thing "rare" about this disorder is the amount of people who are properly diagnosed within their lifetime - awareness can help change this.

Friday, June 8, 2007

Mags' Ehlers-Danlos Syndrome Responsibility

Here's a little about myself (and my EDS philosophy):

Greetings, everyone – I'm Mags from VA (just outside Washington DC). I was born in 1966 to a young woman in DC who may or may not have had EDS. My birth record doesn't seem to exist on file anywhere anymore so any chance of tracking down my family history is pretty small. This is one reason why it took 35 years of my life to find out that I was born with this genetic condition called Ehlers-Danlos Syndrome (EDS). Another reason it took so long for me to get a diagnosis is because doctors do not receive a proper education about our condition. Why?

Most of us are taught that we are supposed to trust our doctors – that they are the experts, and that they will always try to help you when you are "sick." But then, most of us who wait 5, 10, 15, 20, 25, 30, 35 years to find out that there is a condition called Ehlers-Danlos Syndrome that explains every complaint, every pain, every injury, every difficulty, every development, every risk that we've experienced in our lives have grown to lose trust in our doctors, begin to question their expertise, and begin to doubt that they are really trying to help us, at all. But, is our doctor's lack of knowledge about EDS the doctor's fault?

What if a comprehensive study of EDS were conducted so that all the manifestations and phenomena of our condition were thoroughly researched, explored, tested, documented, and ultimately published? What if these findings finally made their way into the current medical journals, and ultimately found their way into all the textbooks in all the medical schools and in-depth and thorough portraits of this serious and varied condition were finally presented (rather than quarter-page anecdotes crammed in a half-semester on "extremely rare disorders" about which students are told they have a 1% chance of ever encountering a real life example in their entire medical career)? Then, wouldn't our doctors have received the appropriate knowledge and tools to help them then to recognize, diagnose, and possibly even treat EDS?

Who will pay for such a study? ( See: )

What if the general world population grew more educated about EDS through human interest stories, through a famous spokesperson, through a character in a TV show, through a segment on a medical series, through radio public service announcements, through magazine articles, through ads, through local events, through friends, neighbors, coworkers, candy wrappers, coffee, candles, note cards, bracelets, t-shirts, concerts, meetings, fliers, emails, etc., through YOU – wouldn't so many people become more familiar with Ehlers-Danlos Syndrome? Could this help them better recognize the historical underestimation and utter mistreatment of those in our population? Would this help them then recognize the need for research and statistical studies so that medical textbooks can be updated? Would they then stand along-side us (their family, their friends, their coworkers) and help us demand funding for these studies, help us demand action, help us demand change??

Yes! ( See: )

Ask yourself, realistically, which of these conditions is more likely to occur first?

  • The more doctors are taught about EDS, the more people with EDS will be diagnosed and studied (and possibly even treated, someday)?
  • Or, the more people that are diagnosed with EDS and studied, the more doctors will be taught about EDS?

Both of these conditions require that each and every one of us gets involved in spreading the word, spreading the need, spreading the story. If we want to see a change in this world, we HAVE to get this change started ourselves.

Why do I volunteer to spread the word about EDS?

When I was diagnosed with Ehlers-Danlos in 2002, the EDNF provided excellent information and was a great source of inspiration to me in my quest for answers. I'm looking for an opportunity to give back to the members of the EDNF who have served and continue to serve as a great source of emotional support, camaraderie, friendship, and hope to me. I feel that no one should go through life with their EDS diagnosis alone, and if there's anything I can do to help I will do everything I possibly can.

When diagnosed, I immediately asked my new doctors to help me find a network of people who were holding EDS group meetings within a few hours of my house. My husband drove me to one of these meetings, then another, and then another. These were people just like me! I felt normal for the first time in my life; e.g., when the talk in the room came to a lull, our popping joints spoke for us. I was all of a sudden a part of a real kindred family.

The people who ran these groups were hard workers – hard workers who had hit brick walls or even had the walls fall completely down on them. They were tired, they needed help – they needed EVERYONE to get involved. And, so, I did – in little ways at times and in bigger ways whenever I could. Meanwhile, the Internet and the EDNF website and organization also continued to grow. Not only did I have the opportunity to communicate and network with people within a few hours of my house but I was beginning to cultivate friendships with EDS affected people all around the world. A couple of years later, another group started-up an hour or so from my house in a different direction and I whole-heartedly lent my support. In my ongoing discussions with people from all over, so many expressed the wish that they too lived near such meetings – that they too wished to experience the sense of belonging that I had found.

I began to realize that these groups provide far more than camaraderie or support; they provide validation, empowerment, and inspiration to me and others. This realization helped me understand that it is important for me to continue to help these groups in any way I can. It always thrills me when I learn that my friends were being connected to each other in ways that had not been possible before. Another couple years later, and the next thing I knew, yet another group formed within a few hours of my home in yet another direction. And in the meantime, with the encouragement of a nearby friend, we had even started our own EDNF affiliated group in Northern Virginia.

As a volunteer I wish to enable EDNF affiliated Local Groups to thrive. Local Groups are most often the first point of contact (after the initial medical professional who first utters the words "Ehlers-Danlos") for people who are searching for answers. Groups who may only have a scattered few members and who can only meet the most basic of requirements to remain affiliated with the EDNF serve as a most valuable resource to those who are newly diagnosed with EDS; a Local Group is the reassurance that this person is not alone, or "the first of his kind." A Local Group IS the person with EDS – they are our fellows, they are our selves.

What experience do I bring to the party?

I possess exceptional organizational skills. I have a great ability to determine how to streamline processes in order to increase maximum effectiveness. I have extensive editing, writing, and public speaking experience. I'm knowledgeable in computers, and am an effective communicator.

I keep my EDNF membership in good standing and have active and ongoing experience working within several EDNF Local Groups; I maintain active familiarity with the EDNF website and Local Group Bylaws, Regulations for Local Groups, and the Local Group Leaders' Handbook; I understand the importance of adherence to confidentiality guidelines, and in meeting deadlines in a timely manner; and I am capable of representing the EDNF in a professional manner. I look forward to supporting the overall vision of the EDNF in a more involved capacity.

What do I want to achieve?

Bureaucracy can sometimes appear overwhelming, tiresome, or confusing. I will use my organizational skills to help encourage and empower Local Groups to evaluate and determine their needs, and to meet their goals with consistency. Local Groups are an invaluable resource and it is imperative to do everything in our power to ensure their continued existence and health. We ALL must support our Local Groups, and I look forward to doing so in any way I possibly can.

People with Ehlers-Danlos Syndrome all around our country deserve to feel that they have a support structure in place through their Local Group. Their Local Group serves as an important resource, and the closer one is to a Local Group helps one feel less alone – there is someone else out there sharing their experiences; someone out there with whom they can share their experiences; someone out there who has already been through what they are about to go through; someone out there who will understand what no one else can; someone out there who is trying to gather and compile and share information; someone who is making an effort to spread the word about EDS needs; some where out there where this person is normal, accepted, understood, supported, assisted, empowered, championed.

I will do everything in my power to help my Local Groups achieve and fulfill this role.

[Always check with your doctor - my posts should be considered my informed personal opinion which does not necessarily reflect the official position of the EDNF or any other organization or person concerned with Ehlers-Danlos Syndrome. Also, this is a blog that will not be updated regularly. I am more actively involved in member postings within so perhaps I'll "talk to you" sometime there. Thanks!]