EDS and CTD New England/MA Support Group

May is EDS Awareness Month and there are indeed several ways to raise accurate and progressive awareness of EDS in all its types and how their “lovely” comorbidities are presented.

Unfortunately, important information gets lost in the same old of stale messaging and misinformation that we have seen year after year.

I am going to cut through the maze and confusion and list some of the most important things that should be known. The information should be shared and thoroughly researched in May 2024 and every day of the year going forward.

–hEDS is not rare. All the other types are and they also need far more attention than they are presently getting. When a doctor or medical provider hears ‘Rare,’ they feel they will most likely never see the condition and tend to spend much less time learning about it.  All types of EDS have a genetic marker except hEDS, making a definitive diagnosis possible.  What should be known and understood is that hEDS is more about the comorbidities.

–HSD diagnosis is easier to make than an hEDS diagnosis because it is essentially a catch all. The differentiation offers no treatment improvement. In reality it complicates and makes more difficult the hEDS diagnosis which in turn causes some to wrongly lose their hEDS diagnosis and care.

 –The Beighton Score is not an absolute determinant of hEDS. It should not be a diagnostic gatekeeper.  The extent of comorbidities is more germane than current hypermobility.   Not everything is clear cut, e.g. What my body and its wonderful parts could do when I was younger, I can no longer do now. Does that change the diagnosis? Of course not.

–IF EDS is in our medical records, then accusations of child abuse and neglect should not be made unless absolutely proven to be the cause.  Also, if it is mentioned in our medical records, the doctors and medical providers that treat our mast cell, POTS, subluxations and dislocations, low bone density (osteopenia or osteoporosis) and a few other conditions that affect our skin, blood flow, bones, joints, etc. should carry more weight and validity than any doctor that has seen the patient for a few hours.  Our doctors should be listened to instead of being ignored. Those three word, ‘Do No Harm’ is not meant to be a slogan but as a clear and ethical code for all medical providers to live and practice by.  

–EDS is not a psychological or a conversion disorder. Granted that many EDSers have at least two of the following: ADD, ADHD, PTSD, NVLD, Autism, Anxiety and Depression. None of these conditions cause any structural issues/conditions like tethered cord, cranial cervical instability, Chiari malformation, subluxations, dislocations and on and on. It is hard to imagine that anyone going through the multitude of health conditions that we do would not be a little anxious and possibly depressed.

–hEDS can be diagnosed at an early age. Most children are flexible, that is part of the body growing but most children don’t have to lay down when they are at school or sit down when they are dizzy or have physical reactions to certain odors, sounds and light, unable to eat certain foods due to GI distress and pain and many more. If present at any age, EDS should be suspected even younger than 18.  You don’t need to wait until maturity or a disaster for the proper diagnosis.

–EDS research of all types has to be greatly increased and geared to areas needed the most. Many of the comorbidities that we share are not being researched at all. There is important on target research that is being done. Just not enough. It’s important to support those that take on this collagen and comorbid beast. Thank you to all of them!

—-I could probably go on a lot longer, but my fingers and brain are cramping up. For those of you who know me or those that don’t, I have 23 years of experience being a national disability and medical advocate for EDS, Loeys-Dietz and Marfan Syndrome and their many comorbidities. I also founded and co-lead the EDS and CTD NE/MA Support Group in 2010 and I founded, and I am the President of the Connective Tissue Coalition, Inc. which I know will make a major difference in all these areas that I mentioned above and more as we grow. I also am a contributor to the wonderful book ‘Disjointed’ and the NASEM’s Selected Heritable Report in 2022 made for the SSA on EDS, Loeys Dietz and Marfan syndrome.

Thank you for for continuing the movement to correct misinformation, initiate and promote viable and on point research and to find answers that lead to not only a better quality of care but change the landscape of what EDS really is, and to take us far from the invisible and into the light of clarity and true understanding.

Wishing you all a very happy, healthy and enlightened of an EDS Awareness Month possible!!!–Jon Rodis