Wanted: More Celebrities For EDS Awareness – Do You Know One?

Wanted: More Celebrities For EDS Awareness – Do You Know One?

By Ellen Lenox Smith.

Denver Broncos cornerback Brendan Langley will wear zebra-striped cleats to raise awareness for the Ehlers-Danlos syndromes as part of the NFL’s #MyCauseMyCleats campaign. Langley chose to spotlight the Ehlers-Danlos Society to honor a friend.

https://www.ehlers-danlos.com/mycausemycleats2018/?fbclid=IwAR3nE5DMUXpRd9BCBQhkmYanYy7rfwsJTdJOOnKJFKPW8pDRzs-79rYu1qU

Taken directly from the EDS Society page:

“The Ehlers-Danlos syndromes (EDS) are a group of 14 heritable connective tissue gene disorders that produce a spectrum of complex problems across multiple systems of the body. The physical characteristics that are common to all types of EDS include hypermobile joints, skin hyperextensibility, and tissue fragility. EDS is known to affect more than one in 5,000 men and women of every race and ethnicity. Each person’s case of Ehlers-Danlos syndrome is unique. Severity may range dramatically, even within families. Prognosis depends on the type of Ehlers-Danlos syndrome and the individual.

“We are incredibly grateful to Brendan Langley and the Denver Broncos for choosing the Ehlers-Danlos Society for #MyCauseMyCleats,” stated Lara Bloom, International Executive Director for the Ehlers-Danlos Society. “Brendan is correct: the Ehlers-Danlos syndromes are all too often overlooked, leaving many without a diagnosis for years. EDS in the spotlight on a wide-reaching field like the NFL makes a huge impact as we work towards worldwide awareness…”

As we continue to attempt to cope with this very challenging, often misdiagnosed and not readily recognized condition, securing assistance with raising public awareness can prove critical in the process of seeking the answers and vindication we all need and deserve. Seeking the support of the high profile professionals in fields other than medicine is a legitimate and often effective method of focusing public attention of issues such as the need for research and the treatment of painful and debilitating and chronic conditions. The more someone is recognized and respected, the greater the opportunity there is to attract attention and promote education and interest in a specific issue such as EDS.

Too many of us have spent years not knowing what is terribly wrong. Upon learning the reality of our diagnosis, we them must confront the fact that our journey will still be complicated, difficult and for the most part, lifelong.  It is difficult to find doctors who accept this is real, know how to help guide us, and want to take the time, which our complications often require. EDS patients would like a commitment from the medical professionals to invest in the needed research to seek a cure and effective treatment for this painful and often debilitating condition. We want nothing less than the attention paid to other serious medical conditions such as MS, cancer or Diabetes.  We need a cure, we need a plan, we need access to help for from all across the world and we needed this yesterday!

So, if you happen to know you happen to know someone that could help us with exposure for awareness, PLEASE consider asking them if they could help our awareness cause.

Here is who you would want to contact with their information:

The Ehlers-Danlos Society Headquarters

  • P.O. Box 87463
  • Montgomery Village, MD 20886
  • P: 410-670-7577

The Ehlers-Danlos Society – Europe Office

May Life Be Kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

 

 

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Jade

I have ruptured my back three different times had surgery on it once did not help I have fibromyalgia I have osteoporosis and if I do not have some pain medication is very difficult and painful to even get out of bed to shower cook go to the store I need it I do not get addicted to anything and I could stop taking it I would be in a lot of pain that I would not need to be in if I am allowed to take what is needed to help me.i pray our pain medication is not taken away from me & others whom may be in even more pain then myself.

I have several friends who made career moves because they got diagnosed early with EDS. One is a former rescue firefighter and paramedic who moved indoors and became a 911 operator and dispatcher…at a younger age her tiny size and hypermobile joints enabled her to gain access to accident victims in tight locations. It was a shock to learn she was in danger of joint damage, but she wants to be in her children’s lives and can do that, thanks to early diagnosis. We need more research into this disease and we need awareness of the pain relief needs of these patients. I’m asking my friends to wear zebra stripes too.

Excellent story Ellen! Bravo to this man for raising awareness by wearing a pair of shoes that are different from the rest! He like the rest of us, now stands out. Wouldn’t it be wonderful to eventually see the whole team wearing these shoes?! In the entertainment business certainly they most all know someone in some form or fashion of chronic pain. Just to get the word out could to be a blessing and a half to all of us, perhaps including theirselves as well. In the meantime I pray more people with louder voices will be able to speak on behalf of those of us who can do little else then what we’ve already tried. You’ve definitely gotten the word out about EDS and I pray they began working on awareness and a cure. We all have our cross to bear so to speak but every illness deserves acknowledgement, research and hopefully a cure. May God continue to bless and keep you as well as the rest of our brothers and sisters who live daily in chronic pain.