Remembering Renée

Laurie Kelley and Renée Paper, 2002

This past week I’ve been working diligently on updating my book, A Guide to Living with von Willebrand Disease. I feel guilty saying it’s my book—it was actually “our” book, my and Renée Paper’s. It’s been out of print a while, and we truly need this resource. While thinking of Renée as I edited it, I realized that tomorrow marks the 10th anniversary of her passing, and working on this book made me realize again what a valuable leader, friend and advocate she was.

She was only 49 when she died, after an eight-week hospital stay following a fall. She had dealt with multiple health challenges: von Willebrand disease, diabetes, hepatitis C. Compounding this was obesity. After she lost her sister Michelle, who suffered from similar health concerns, she decided to have gastric bypass surgery, in an attempt to improve her health. She lost a remarkable amount of weight, but the years of illness had taken their toll on her body. What’s truly amazing is that nothing, nothing, seemed to slow Renée down!

She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Fiery style of lecturing? If you never heard a Renée Paper speech, you missed some great and shocking speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

 Renée traveled with me to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.

 Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.
Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

 So we remember an inspiring and action-oriented leader, who was warm and loving, and also at times, a pain! And she knew it, and didn’t care. She had places to go and things to do, and a higher calling. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day—including the world’s first book on VWD, which will be re-released in 2018. A legacy like that is the mark of a true leader.

Dealing the Hand Your Dealt: Pulse on the Road in Las Vegas!

I’m in Henderson, Nevada, a suburb of Las Vegas, the day after we gave another Pulse on the Road symposium about health care insurance. The air is dry and cool, the sky a perfect robin’s egg blue, and I’m surrounded by red and purple mountains. What an enchanting place to visit!

Whenever I am here, I think of my dear friend and colleague, Renee Paper. Renee was a champion of those with von Willebrand disease. She became the face of those with VWD, and advanced care for it, and for Nevada, like no one else. Nevada has an HTC thanks to her; Nevada has an NHF Chapter, thanks to her. Trailblazer, activist, she was also an emergency room nurse who had VWD and her personal story, how she was given a hysterectomy in her early 20s to stop her excessive bleeding and thus became childless, led her to become a VWD Warrior when she was later properly diagnosed as having VWD. She vowed no one else would suffer as she had.

Rewarding a partipant for a correct answer!

It seems we might have another Renee in our midst! We invited Nevada resident Kelly Lynn Gonzalez to speak at Pulse on the Road, upon recommendation of Michelle Rice, vice president of public policy and stakeholder relations at National Hemophilia Foundation. Good gamble. Kelly has VWD, as does her daughter Jacey. Kelly is the mother of 5 (yes, 5!!) and also worked in education, and now works for a specialty pharmacy. She participated here as a mother, to share the story of the birth of her activism.

In a nutshell, it was the struggle to get a diagnosis for Jacey, who suffered terrible bleeding, and who missed 47 days of school in one year, after doctor upon doctor told her it was one thing or another. Jacey had already fought off cancer, and now faced more health problems. Dealing with the multiple needs of her many children, Kelly still was able to fight the system, honor her maternal instinct which told her the doctors were wrong, and push and push not only to get a proper diagnosis, but also then health care coverage! Her insurer would not allow her to use the HTC!

Kelly Lynn Gonzalez implores
the audience to advocate and never give up

Well, that changed eventually.

Kelly is a powerful, emotive storyteller, and her presentation had many in tears. The energy level in the room, even following two hours of insurance lectures, was palpable. Kelly inspired many, I am sure, to rise up and become better advocates for their children. The audience was 60% families with VWD; an anomaly for us!

I thank everyone from Nevada who came to this symposium. Executive director Kelli Walters and her team did an amazing job handling this event. Thanks to our own Zoraida Rosado for organizing, shipping and set up. Thanks to Michelle Rice of NHF, and also thanks to Baxalta for sponsoring this!

Michelle Rice, NHF, speaks about
preserving healthcare options

Above all, thanks to every single audience member. Michelle and I agreed, from the podium, that in 7 years we have never seen a more attentive, engaged audience. (Well, Alabama was a close second!!) In appreciation, LA Kelley Communications is going to make a donation to the chapter for the wonderful audience. When you are a speaker, an attentive, receptive and engaged audience is everything.

Laurie Kelley with Renee Paper
in Puerto Rico, 2006

Renee used to tell me, “It’s not the hand you are dealt, it’s how you play that hand,” using an analogy fitting for a Las Vegas lady. In other words, you have VWD (or hemophilia). So what? The important thing is what are you going to DO about it? Renee was a no-nonsense, fix-it-now kind of lady. She never engaged in self-pity, and didn’t exactly coddle others. But she was compassionate. Not intimidated by anyone, she took the hand she was dealt (VWD and losing her ability to have children) and turned it into a national and then international crusade for better health care for those with VWD, especially women. Sadly, Renee passed away in November 2007 due to health complications. She is terribly missed. I feared for a long time there would be no one to fill her shoes; who could ever speak with that fiery passion? Who would have that dedication?

People like Kelly Gonzales give me hope.

Click here to learn more about Renee Paper, RN.


Amazing Book I Just Read


The Witch of Lime Street: Seance, Seduction and Houdini in the Spirit World  [Kindle]
David Jaher

It’s fitting to have read a book about Houdini on a plane ride to Las Vegas. We all know he was the master illusionist (much like David Copperfield, who I will see tonight at MGM, is today). But who knew the rest of the story? It’s fascinating! Following World War I, families were so grieved by the tremendous loss of life, they turned to seances and “spiritualists” to help them contact their deceased loved ones. One outspoken believer in contacting those in the afterlife was Sir Arthur Conan Doyle, the author of Sherlock Holmes! He traveled and spoke widely about spiritualism. It became such a hot topic, with so many engaged in it, that Scientific American decided to hold a national contest to see if anyone could prove that spiritualists could really communicate with the dead. On the committee was Sir Arthur’s good friend, Harry Houdini, who did NOT believe in spiritualism. As a master illusionist, he believed everything could be explained as a deception. And he successfully debunked many who claimed to have contact with the dead. But the hardest case was little sweet Mina Crandon, who lived on Lime Street in Boston, the wife of a very successful surgeon. She wasn’t a publicity seeker and didn’t want the prize money. And no one could seemingly detect how she was able to levitate a table, conjure spirits that spoke, command items that flew around the room. Without giving away this fascinating and sometimes lurid tale, this case destroyed the friendship between Sir Arthur and Houdini, made Houdini more famous, and yet reviled by the spiritual community, embarrassed the esteemed Scientific American publication, and brought to light even more bizarre facts than anyone expected! It is a riveting page-turner, extremely well written and informative, full of wild characters and celebrities, and the ending is a shocker. Read it! Five/five stars!

In Memoriam: Renee Paper


It is with great sadness that I inform the bleeding disorders community of the passing of its greatest advocate on von Willebrand Disease. Renee Paper died November 7, at age 49, after an eight week hospital stay following a fall. Renee had been on disability for the past three years, and yet received an achievement award just last Saturday at NHF’s 59th Annual Meeting, in recognition of her outstanding life’s achievement in helping others with bleeding disorders. People around the world knew Renee, as she traveled and lectured frequently, before her disability. As many of you already know, she had had gastric bypass surgery, loss a tremendous amount of weight in a short period of time, seemed to recover and was doing well, but then, health issues compounded. She had VWD herself, and also battled hepatitis C, and various other problems. Many of her friends tried to stay in touch by phone or by visiting her in Las Vegas over the past several years.

Renee was a personal friend, and also my co-author on the book “A Guide to Living With von Willebrand Disease.” She had traveled with me and my family to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renee knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.

Messages have been pouring in to me from around the world. Helen Campbell, UK, (http://groups.msn.com/WomenwhoBleed) wrote: “Renee has been a great inspiration to me personally (and to other women) in raising awareness and promoting advocacy within, and outside of, the bleeding disorders community regarding the issues surrounding women and their bleeding disorders. Her work has touched the lives of many both directly and indirectly. It is a great loss for the Haemophilia communities and yet must be a greater loss for her family. Thank you, Renee. You made such a difference. From your acorns you saw great oaks grow, now the branches are reaching far and wide.”

Parimal Debnath from the Haemophilia Society of Bangladesh wrote, “It’s really sad news. My condolences for her family. May God rest her soul in eternal peace.”

Dr. Carol Kasper, renowned hematologist, Emerita Professor of Medicine, University of Southern California, Orthopaedic Hospital and colleague and friend of Renee’s, perhaps summed up Renee’s legacy and memory best:

“Renee Paper had a vision for Nevada, its own hemophilia foundation, its own hemophilia treatment center, and she made them happen. It wasn’t easy. Renee was blessed with energy, enthusiasm and perseverance. She had a great ability to organize and to inspire.
“She also knew how to have fun. She was the life of the party! I remember driving with her down a country road in Ireland, in sheep country. Sheep strayed across the road. Renee stopped and shooed them off, and you have no idea how hard it is to shoo a sheep. We cleared a bit of road, drove on around a curve, and, more sheep! We wound up in gales of laughter as we
continued to shoo the sheep, and shoo and shoo.
“I am grateful to Dr. Jonathan Bernstein and nurse Becki Berkowitz, also Dr. Heather Allen, all of Las Vegas, who watched over Renee in her last illnesses, whenever Renee’s spirit of independence would allow it.
“I shall remember her achievements, but the images of her exuberance and hilarity are foremost in my mind at this time. Her name will be remembered.”

Renee’s funeral will be held Monday, November 12, at 2:00 p.m. at:
Mount Sinai Hollywood Hills–Tanach Chapel
5950 Forest Lawn Drive
Los Angeles, CA 90068
www.mt-sinai.com/directions

Donations may be made to:
Temple Bnai Hayim
4302 Van Nuys Blvd.
Sherman Oaks, CA 91403, or

The National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001

Cards may be sent to:
Harry Paper
4004 Sapphire Drive
Encino, CA 91436

Good-bye to a tremendous leader, warm and loving human being, educator, visionary, and friend. There was ever only one Renee, and we will miss her. Please post your thoughts, stories and tributes to Renee here.

(Photos: In Puerto Rico, laughing about the spit, 1999; One of Renee’s famous post cards; In Connecticut at Camp Hole in the Wall Gang for a VWD family weekend)

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