C
Copyright 2010, All Rights Reserved, EDS Network C.A.R.E.S., Inc.
A
R
E
S
~
~
~
~
Cathy Bowen - Board of Directors

This diagnosis came too late (three days before his death) to help save her son's life. Since an accurate diagnosis of Vascular Ehlers-Danlos can mean the difference between life and death – had Cathy’s son David, been properly diagnosed - he may well be with us today. She believes that everyone deserves a correct medical diagnosis.

Cathy has made it her mission in life to collect and distribute the knowledge that enables people to seek out specialists in the field of connective tissue disorders to obtain correct diagnosis. If Cathy had been correctly informed of the severity of David’s illness she would of been fully aware of EDS. She would have acquired all the details which would of enabled her to make the safest, well-informed decisions concerning David's healthcare, medical treatments, and procedures.

An accurate diagnosis can make the difference between “life and death” so it is vital that early signs, clinical presentation of characteristics or symptoms are properly evaluated and diagnosed. This is why Cathy has dedicated her life, in the memory of her son David, to spread awareness of the criteria for a correct diagnosis of Ehlers-Danlos Syndrome (EDS).

For more than eleven years, Cathy has been instrumental in the development of educational tools for healthcare providers, patients and their families. Working with numerous EDS organizations she has spent literally thousands of hours researching the latest medical information, treatments and standards of care for EDS patients.

Cathy was also the first to write, produce, print and distribute the first ever US EDS medical information leaflets that listed all the facts, symptoms and characteristics of each type of EDS. Cathy personally placed these leaflets in hospital’s, school nurse’s offices, as well as numerous physician’s offices throughout the New Jersey, Pennsylvania Tri-State area. She shared this idea with the Ehlers-Danlos National Foundation (EDNF), and shortly thereafter they produced their own information leaflets.

Cathy has contributed greatly to the success of the Ehlers-Danlos National Foundation’s medical/educational materials. She assembled a team of designers (Linda Lenz and Dave Puechner) who would design and program her vision. Cathy arranged a meeting to bring this concept to the Board of Directors of EDNF and they approved production on the spot. She painstakingly assembled the research for the Emergency Room Physician’s Reference CD-ROM, for the Vascular Type of EDS .She composed the standard of care for EDS emergency room trauma cases and oversaw all of the design and production of the piece. This first production was a huge success, and is credited with saving four lives in the first two years of publication. This guide to care and Emergency CD-ROM put vital information into the hands of physicians with the ability to educate others and change the outcome of many cases. The material has now been distributed world-wide.

Cathy also worked on the committee to help produce the latest EDNF's “All Types of EDS” CD-ROM. This educational piece defines each of the 10 types of EDS in great detail and uses photographs and physician commentary to educate. If an EDS patient is able to use a quick resource of pertinent medical information in an emergency situation it will continue to save lives and increase the quality of care. More than 10,000 copies of these CD-ROM’s have been distributed to health care professionals across all disciplines, and around the world.

Cathy lives in New Jersey with her husband Dave, and their daughter Melissa.

EDS Volunteer Activities include:
  • 1996-2005
    Founder and President of the Southern New Jersey Branch of the Ehlers-Danlos National Foundation   (EDNF). Organized and hosted local support group meetings that provided member support that brought those with EDS face-to-face with others, EDS educational material, as well as being an advocate for them, offering her guidance, knowledge, and direction.

Attended These Public Events Annually:
  • 1996-2006
    “Show Case of Services” (a local opportunity to network with other non-profit organizations as well as meet the general public face-to-face to bring EDS awareness and diagnostic agencies information) once a year at the local Mall, where she manned an EDS educational booth.

         "Children's Health Fair", sponsored by the American
          Heart Association - EDS Booth

         “Stand For Children USA " - NJ Chapter Board Member -
          EDS Booth

          "Earth Day Fair" - EDS Booth

  • 1997-Present
    Contributed and created numerous websites for Memorial and EDS Awareness
  • 1997-2000
    Organized and hosted a Spaghetti Dinner, EDS Fundraiser
         Organized numerous Yard Sales, EDS Fundraiser
         Organized a Flea Market, EDS Fundraiser
  • 1998
    Keynote Speaker: EDNF’s First Black Tie Fundraiser "Comic Connections Fundraiser" in California - Spoke about her experience; the other side of EDS - the horrific, devastating, incomprehensible side: "Which is Death".
  • 1998-2002
    Attended the Jordan David Specht's Memorial Golf Tournament to raise funds for EDNF - supplied educational material, pamphlets, brought her knowledge and awareness to many that day.
  • 1999
    Meg Harman’s testimony to increase EDS awareness before the Subcommittee of the Labor, Health and Human Services and Education of the House Of Representatives Committee on  Appropriations; With Cathy's permission David’s story was included in her presentation.
  • 2000-Present
    EDS Today Newsletter, One of the Founders
  • 2001-Present
    The Compassionate Friends (TCF) NJ Chapter - Treasurer
  • 2002
    Emergency Room Physician’s Reference CD-ROM, the Vascular Type of EDS
  • 2004
    All Types of Ehlers-Danlos Syndrome CD-ROM
  • 2005
    EDNF website, supplied suggestions, input, feedback, and saved written medical content from the 2 CD- ROM’s
  • 2006-Present
    Ehlers-Danlos Syndrome (EDS) Network C.A.R.E.S. INC
  • 2007
    Created a Memorial/EDS Awareness website on Networking sites, MySpace and Facebook

Media Coverage
  • Two published local newspaper articles on her plight, her efforts with waging this fight to bring awareness to this rare syndrome that claimed her son's life, as well as printing all the facts about EDS.
  • Health Update (90 second) NBC Local Channel 40 - aired
    an interview segment on local television on Ehlers-Danlos Syndrome characteristics in order to bring awareness.
  • Comcast NewsMakers CN8 - 5 minute interview segment on EDS that aired for a week
  • Given permission for her son David’s story to be included
    in numerous medical journal articles
  • EDS (Ehlers-Danlos Syndrome) Today

2000-Present

  • One of the Founder’s, Associate Publisher, and Board Member - EDS Today is a newsletter   for, by, and about people with EDS, their families,  and the medical community 

Ehlers-Danlos Syndrome (EDS) Network C.A.R.E.S. INC.
  • 2006-Present  
    Board of Directors
  • Authored “Myths & Facts about Ehlers-Danlos Syndrome” (Linda Lenz Editor)

AWARDS 
  • Recognition Award/Addressed the Absecon Kiwanis Club,
    on EDS "98"
  • Appreciation/Stand For Children USA - Stand For Children Day “98”.
  • Appreciation: March of Dimes/WALKAMERICA “98” EDS Team, raised $1000.00 for community services to help support babies/children with birth defects
  • EDNF “Shining Star Award” for EDS Advocate/Volunteer work - 2001 
  • EDNF “Certificate of Appreciation” for assistance with EDS Emergency Physician’s Reference Guide CD-ROM project - 2002

What sets Cathy apart from most other EDS volunteers and/or advocates out there?

Cathy doesn’t physically have the disorder, and has no other family members that have been diagnosed with EDS. Although her life has been shattered and tremendously affected by EDS, deep down she feels it is her heart and soul that has EDS.

Cathy's son David was the only one that was eventually diagnosed with EDS. She promised David and herself the day that he died that she would make EDS awareness and education her life-long mission for the sake of other’s who suffer from this disorder every single day.  Cathy does all she does in loving memory of her son,
David III...unfortunately, that's what makes her different.
web site by ~ Lynn Sanders

Cathy Bowen has been an advocate for people with Ehlers-Danlos Syndrome (EDS) since her son David’s tragic death in 1996. David died at age 14 of severe systemic sepsis from a delayed diagnosis of an anastomosis breakdown following his colostomy reversal surgery, as well as other complications. He was eventually diagnosed with the Vascular Type of EDS.
Cathy & Daughter Melissa
A Genetic Connective Tissue Disorder
This page was last updated: June 28, 2010