Thursday, June 24, 2010

Cynthia Kahn: 'A Diabetic Warrior'

Even as a little girl, Cynthia Kahn showed the kind of passionate determination that would be evident in every part of her life and allow her to achieve her dreams.

No matter what, she never let anything slow her down in achieving what she thought was possible, according to friends and family and colleagues.

She set out to ride a bike by the time she was five, and even after "falling off and getting back on" repeatedly she did just that. The same thing happened in high school, when she overcame inexperience and a lack of knowledge and became a letter-earning tennis player.

The same passion and determination played out in every aspect of Cynthia's life, from her professional work in advancing public health information and librarian instruction, her devotion to the history of medicine, to her passion for diabetes advocacy efforts stemming from her years of living with Type 1 diabetes.

"That’s just the way Cynthia was," said her dad, Ted Kahn. "She was from her beginnings a very determined child and person. When she put her mind on something, it was never 'if' it would happen, only a question of 'when' it would happen."

Cynthia Rose Kahn died June 7 at age 39, in her apartment in Orlando, Florida. Her parents believe that her blood sugar may have dropped dangerously low while she was sleeping and caused her to not wake up. She is survived by her parents Rhoda and Ted Kahn, grandfather Sol Gold, all of West Bloomfield Township, Mich.; brothers Jeremy Kahn of Fort Lauderdale, David Kahn of Baltimore, and Daniel Kahn of Royal Oak, Mich. - as well as many loving uncles, aunts, cousins and friends.

Diagnosed with Type 1 about seven years ago (as an April 2010 Twitter post says), her parents think that she had actually developed the chronic condition many years earlier before the actual diagnosis that came when she was living in Washington D.C., and led to her collapsing and going into a coma at a hospital and staying in an ICU for five days. Since then, her dad said she'd pushed for good control and had gone on an Animas Ping pump, but still had what he describes as “brittle” diabetes.

Most importantly, though, his daughter didn’t let diabetes get in the way of her living a full and successful life. Even when her blood sugars swung from 40 to 450, Cynthia kept a hectic scholastic and professional life and didn't let those around her see the impact. Her dad says she was all about remaining positive, and cared so much about openness, determination, aggressive pursuit of one's dreams, and an overall concern for others and kids.

“Somehow she always kept a great smile on her face and a positive attitude,” Ted Kahn said. “Few really knew her pain, her daily episodes, her depression…but that would all pass and the ‘Cynthia spirit’ would emerge. She’d stay upbeat and kept that smile, because she really wanted to help people and prove that anything was possible.”

A native of Oakland County, Michigan, Cynthia lived a life that took her through the years from her home state to Florida, Paris, Washington D.C., Oregon, and back to the nation’s capital before a return to Orlando.

She attended Eastern Michigan University, earning a B.A. in French and travel-tourism before going to work for Disney – twice in Orlando and then for 20 months at EuroDisney in Paris. Her dad says she back “more serious,” then set her sights on becoming a medical librarian.

Cynthia attended the University of Michigan in Ann Arbor and earned two master’s degrees - one in public health and another in information and library sciences. That education led her to work as a reference librarian for a hospital system in Portland, Ore. and as a manager at the Association of American Medical Colleges' archives in Washington D.C. She began there in August 2006 as a reference and instruction librarian at the Himmelfarb Health Sciences Library at George Washington University Medical Center in Washington, D.C., and she was pursuing her Ph.D. in history at GW.

In March, she made a move to the University of Central Florida's College of Medicine, where she took over as head of public services for the Harriet F. Ginsburg Health Sciences Library and basically served as the face of the library. In only three months in Orlando at the UCF position, everyone was already recognizing what an amazing asset and overall inspiration she was to have there, according to her boss and the library director. Cynthia was working on displays and exhibits on the history of medicine that would be housed at the health sciences library, which was a way to educate the public, students, and faculty, about the past.

Aside from her librarian roles, Cynthia also worked as an adjunct professor for about four years and taught first-year medical students about the connections between computers, social networking, and clinical issues and how that can all be used.

Her dad proudly notes Cynthia’s active membership in the Public Health/Health Administration section of the Medical Library Association, and how she’d published 20 articles on public health and medicine, spoke at conferences nationally, and worked tirelessly to help and support everyone she knew in real life and in the online communities.

“Cynthia was passionate about all she did, and was active, not passive, in every organization she belonged to,” her dad said. “But her most important calling was as a diabetic warrior.”

One of her passions was the Extreme Weekend for Children With Diabetes, a twice-a-year camp in northeast Maryland that is run by the non-profit group Adventures For The Cure and gives kids a chance to do intense sports while keeping up on D-Management. Cynthia had twice volunteered as a camp counselor there for diabetic kids between 8 and 17, and leaders say she was instrumental in making the Extreme Weekend what it is today. Most recently in April, she had attended the camp and loved the experience.

“She was a wonderful role model for the children and touched so many people with diabetes and without,” said camp director Ron DeNunzio. “All the kids and volunteers really loved her at camp, and she wanted to help in anyway she could. We’ll really miss her, but she’ll be with us at every camp and it will go on and on with her spirit.”

In her honor, the AFC has created a Cynthia Kahn Memorial Scholarship Fund to help children who cannot afford to attend the camp on their own without some financial assistance. As of June 21, the camp website says that about $2,300 had been raised.

Moving to Orlando earlier this year, Cynthia’s dad says that she was hoping to work with Extreme Weekend to establish a similar type camp there locally. She also wanted to help the Diabetes Exercise and Sports Association (DESA) branch out more there, particularly at the annual Children With Diabetes Friends for Life conference each summer.

As a Type 1 diabetic energetic about exercise, Cynthia had been an active member of the group and had helped establish the its online presence most recently through Facebook, Twitter, and social media, according to DESA executive director Doug Dressman. She was excited about helping the group expand in the D.C. area and nationally, and he wants to carry on those plans she cared so much about.

“She was so passionate and enthusiastic about diabetes and living a full life with it, and that’s what she did,” he said. “That passion, commitment and energy was infectious and made everyone want to be around her. Cynthia was a cheelerleader who just put a little bounce in your step.”

I'd never had the honor of meeting Cynthia, and we'd only connected briefly through the Diabetes Online Community through social networking, TuDiabetes, and the blogosphere. Yet, we'd shared roots in Southeast Michigan and a love for Detroit - from the Red Wings to the University of Michigan, where she attended graduate school and a place we both probably found ourselves on the same college football weekends through the years. Even more broadly, we shared bonds in advocacy work and that's a story that must be told and carried on by those whose lives she touched.

One comment on her TuDiabetes page captured what hundreds have echoed from across the world, messages that Cynthia's parents describe as a lifeline for them and the family since her death.

"You remind me why I do what I do and also how to live, truly L-I-V-E each day, each moment, to the fullest. With a smile, preferably. I am sorry we never had a chance to meet on this plane of existence. Your memory lives on in the lives of all you touched, whether we met in 'real life' or not. Soldier on in heaven, blessed one, and look upon us and smile. We go on for you -- and for each other."

That is exactly what Ted Kahn said his daughter would want: for all People With Diabetes to be involved and live their lives to the fullest, no matter what, until that wish for a cure can be realized.

“The lesson her life leaves is this: no excuses, just forward, because all is possible,” he said.

8 comments:

Alan said...

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Brenda W said...

That was a really lovely post Micheal. She sounds like she was a lovely woman. What a sad, sad thing.

Anonymous said...

I don't have diabetes, but I work for the Diabetes Research Institute Foundation. This story made me cry!

Wendy said...

Beautiful tribute. Thank you for writing such an uplifting article about such an uplifting PWD.

Anonymous said...

This is very sad news. God Bless Cynthia and her family.

Timothy Alan Lamb
Lake Oswego, Oregon

leslie said...

I just stumbled upon your beautiful post. I first met Cynthia when we worked together in Paris at EuroDisneyland (now Disneyland Paris). THat was back in '93 and we'd kept in touch all these years. SHe was truly a wonderful person.

Leslie Racine Vazquez
Providence, RI

liz said...

Cynthia was a dear and close friend of mine, and I count myself very lucky to have known her. Like Cynthia, I have very some significant medical problems, and she remains in my heart and mind. I have just published an article that I will dedicate to Cynthia; she remains an inspiration to me in my life and my work.

Anonymous said...

Today is the third anniversary of Cynthia's death, but it is only her body that is gone. Her spirit and determination and her efforts to find a cure for diabetes lives on in her father and I.