Dr. Algimantas S. Kerpe, who has been practicing internal medicine for more than 30 years in Geneva, Ill., is well acquainted with Ehlers-Danlos Syndrome both in his practice and at home. He oversees the medical management of his 20-year-old step-daughter, Carissa, who was diagnosed with EDS – Hypermobility Type during her junior year in high school. She has had more than 14 surgeries since age 12. Since May was National Ehlers-Danlos Awareness Month, Dr. Kerpe and his wife, Melody, feel it’s the perfect time to start a series of articles in the months ahead on a topic that’s close to their hearts.
May was National Ehlers-Danlos Awareness Month, but like any good Memorial Day Sale, we’ve continued the promotion. It was one of 39 proclamations on the 2019 National Calendar of Observances honoring everything from asparagus to water safety. Yet for most people, including even those in the medical community, there is a staggering unawareness about the unfamiliar-sounding connective tissue disorders categorized as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD).
According to The Ehlers-Danlos Society, EDS and HDS are estimated to affect nearly 80 million children and adults worldwide. They are generally characterized by joint hypermobility, skin that can be stretched further than usual, and tissue fragility. EDS and HSD can cause debilitating pain and disability, and they currently have no cure.
Join the Challenge!
The Ehlers-Danlos Society has been spreading awareness about EDS/HDS through a creative month-long program of education, events, and fundraising worldwide. Its theme for May 2019 has been encouraging both those in the EDS/HSD community as well as those in the general public to answer the Society’s invitation to “Join the Challenge.”
What is the Challenge?
Living with EDS/HSD is full of challenges in itself as any Zebra* can tell you. Even though May flew by, Algimantas S. Kerpe, M.D., an internist in Geneva, Ill., wants to continue the emphasis on EDS/HSD awareness in his practice during the months ahead. Dr. Kerpe invites everyone to participate in three challenges: Clinic Brochure Challenge, Connect Challenge, and the Name Game Challenge.
1.) Clinic Brochure Challenge
Pick up a printed brochure on EDS and HSD at Dr. Kerpe’s office at 2172 Blackberry Drive, Suite 204, in Geneva. Help raise awareness within the medical profession — and also with those who need answers! Distribute them to other doctors, physical therapists, dentists, podiatrist — as well as any family or friends who are interested.
2.) Connect Challenge
Help raise awareness and tell the world about the issues that truly matter to the EDS community! Ask friends to join the CONNECT newsletter to keep up to date with the latest research, developments, and community stories about EDS and HSD. Register here: https://ehlersdanlossociety.dm.networkforgood.com/forms/connect-newsletter-sign-up
3.) Name Game Challenge
Get creative and use the letters E-D-S that stand for Ehlers-Danlos Syndrome to describe what life is like for someone with a connective tissue disorder. (i.e., Extremely Delicate Shoulders; Every Darn Symptom). Post your answers on Algimantas S. Kerpe, M.D. Facebook Page with the social media cover titled “Join the Challenge.” Be sure to use the hashtag #myEDSchallenge
Dr. Kerpe hopes that these simple activities will begin to get the word out into the community in a fun and easy way that reaches medical professionals to people who don’t have answers to their confusing medical symptoms.
“The primary care doc is often the starting point and needs to be open to partnering with the patient along the journey to the diagnosis,” Dr. Kerpe concludes. “That’s why EDS awareness is targeted to the medical community as well.” The Society adds that the real message is one of hope. A great deal can be done for EDS/HSD patients if they can get an accurate, early diagnosis and gain access to active management therapies.
The other Daily Challenges that were created by The Ehlers-Danlos Society for May Awareness Month 2019 were geared more toward patients who are living with EDS/HSD. To see all 31 challenges, visit here: https://www.ehlers-danlos.com/2019-awareness-month/2019-awareness-daily-challenges/
An example of a challenge from last month was called the “Life Hack Challenge” — What innovative solution have you found to fix a problem that’s been created by your EDS/HSD or a related disorder? Anyone interested in sharing a creative way that makes life a little easier can send it to firstname.lastname@example.org. Just put “Life Hack” in the Subject Line, then state the problem and give a creative workaround. We’d like to publish your innovative solutions and begin to build a supportive community in the Fox Valley area.
About The Zebra…
FYI: Patients with the Ehlers-Danlos syndromes and related conditions are often called zebras. Medical students have been taught for decades that, “When you hear hoofbeats behind you, think horse, don’t expect a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. In adopting the zebra as our symbol, we are reminding the medical community, “Sometimes when you hear hoofbeats, it really is a zebra.”
The Ehlers-Danlos syndromes are unexpected because they are rare; they remain misdiagnosed or under-diagnosed, and we hope to improve awareness and understanding of EDS, HSD, and all of their related disorders. —The Ehlers-Danlos Society