Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A story of one tween's diagnosis of Ehlers-Danlos Syndrome / joint hypermobility

Wendy is a perky, vivacious adolescent entering middle school with a lifelong vision of becoming an cheerleader. Wendy has been called bendy by family and friends because she’s been limber and flexible throughout her life, earning her the nickname ‘Bendy Wendy.’

 

As soon as she’s about to realize her ultimate aspiration of making the cheerleading squad as a flyer, Wendy worries that her dream will be shattered by constant physical issues plaguing her during rigorous practices and performances. 

 

On the outside, Wendy looks perfectly ‘normal,’ but clearly something more is going on.  Join Wendy and her parents on their journey through a diagnosis and revelations of Ehlers-Danlos Syndrome / joint hypermobility, an ‘almost’ invisible genetic syndrome.   

 

“Bendy Wendy and the (Almost) Invisible Genetic Syndrome… A story of one tween’s diagnosis of Ehlers-Danlos Syndrome / joint hypermobility” was written to fill a need for families, children, and tweens that find themselves in a position of understanding and explaining, in basic terms, Ehlers-Danlos Syndrome and the issues associated with it.

 

It’s been thoughtfully developed by bone and connective tissue disorder expert Dr. Brad T Tinkle and his award-winning children’s book author wife, Laurren Darr.  For almost a decade, they had dinner-time conversations on how to better serve and reassure children and families affected by Ehlers-Danlos Syndrome / joint hypermobility.  “Bendy Wendy and the (Almost) Invisible Genetic Syndrome… A story of one tween’s diagnosis of Ehlers-Danlos Syndrome / joint hypermobility” is the culmination of that goal.

Brad T Tinkle, M.D., Ph.D., is the Medical Director of Clinical Genetics at Advocate Children's Hospital in the Chicago, Illinois area. Previously, Dr. Tinkle served as a clinical and clinical molecular geneticist at Cincinnati Children's Hospital Medical Center (CCHMC). Dr. Brad, as he's called by many of his patients, specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia among the many. While at CCHMC, he served as director of the Skeletal Dysplasia Center, co-director of the Marfan/Ehlers-Danlos syndrome clinic, as well as director of the Connective Tissue Clinics. In addition, he served as associate director in the Clinical Molecular Genetics Laboratory. He earned a Bachelor's in Science for Engineering (BSE) in genetic engineering from Purdue University in 1989 and received his Ph.D. in Human Genetics from the George Washington University in the District of Columbia in 1995. Dr. Brad then attended medical school at Indiana University and completed a pediatric/clinical genetics residency at CCHMC. He also finished a fellowship in clinical molecular genetics at CCHMC following residency. Currently, Dr. Tinkle is board certified in pediatrics and clinical genetics. He currently serves on the Professional Advisory Network of the Ehlers-Danlos Society. Dr. Tinkle has authored medical articles, book chapters, and two books on EDS: "Issues and Management of Joint Hypermobility.." (2008) and "The Joint Hypermobility Handbook" (2010) and is internationally recognized as an expert in the care and management of those with EDS. The Ehlers-Danlos Society awarded Tinkle with the Community Choice Award in 2016. In 2017, he served as editor as well as author and co-author of a supplement for the American Journal of Medical Genetics titled "The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes." The Ehlers-Danlos Society honored Dr. Tinkle in 2017 with a Lifetime Achievement Award.

Laurren Darr has been a plumb-pug-crazy, animal-loving, pet fashionologist and creative since childhood. She immerses herself in expression through writing and art including creating the publishing imprint Left Paw Press in 2008. Laurren also happens to be the wife to her geneticist co-author Dr. Brad T Tinkle. She and Dr. Brad combined their experience and skill sets to create "Bendy Wendy and the (Almost) Invisible Genetic Syndrome... A story of one tween's diagnosis of Ehlers-Danlos Syndrome / joint hypermobility" to fill an area that they both felt needed addressing after many conversations with patients and families afflicted with Ehlers-Danlos Syndrome / joint hypermobility. Laurren has won over forty marketing awards for her background in creating advertising and marketing campaigns for companies and clients of all sizes and is a #1 best-selling author. Her children's book, Lipstick On A Pug, won the Maxwell Medallion from the Dog Writers Association of America in 2015 and was named Children's Book of the Year. In 2016, her PugDala Coloring Book also won a Maxwell Medallion. In August 2013, Laurren combined her marketing experience and lifelong love of pet fashionology to launch International Association of Pet Fashion Professionals, an organization created to provide tools to the pet fashion industry. She's been named a "Paw-er Woman" by the Fidose of Reality blog and was a 2015 &16 finalist for Pet Industry Woman of the Year by Women In The Pet Industry. Laurren also completed her pet fashion certification from FIT (Fashion Institute of Technology). Laurren's busy home is filled with her geneticist husband, her son, Zachary Tinkle, (who is a rising stock car racing star), and her fabulously fashionable fawn pug, Bella.