EDS and HSD Awareness Month is halfway over today. Ok, technically 15/31 but who's counting?
It is exciting to see so many people connecting over these very important and often under appreciated conditions. In scientific communities around the world, Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are gaining recognition. Properly diagnosing and treating people affected by these complex disorders must become a high priority for patients and clinicians alike. Let's keep working towards the common goal of effective and accessible care to improve the quality of life for all who suffer from hypermobility disorders!
Greater awareness benefits everyone so please participate in and share these upcoming events and activities to help spread the word.
1. Watch "Educating the Dance Community" with Lisa Howell on the Bendy Bodies YouTube Channel. Jennifer Milner and I learned so much from Lisa about what every dance teacher needs to know about working with the hypermobile dancer. This fabulously informative episode is also available (audio only) on the Bendy Bodies with the Hypermobility MD Podcast.
Other upcoming podcast episodes include:
"Cultivating Psychological Skills for COVID-19 with Bonnie Robson, M.D."
"Understanding Hypermobility Disorders with Linda Bluestein, M.D."
Subscribe to the Bendy Bodies YouTube Channel here.
Follow the Bendy Bodies Podcast so you're sure to catch every episode.
Subscribe to Lisa Howell's YouTube Channel for great videos on managing hypermobility.
Read Jennifer Milner's blog to learn how she trains hypermobile bodies.
2. Download, read and share Diagnosis of mast cell activation syndrome: a global “consensus-2” published online ahead of print on April 22, 2020. Authored by Dr. Lawrence Afrin with 42 coauthors including me, this landmark peer reviewed journal article seeks to correct the current climate of underdiagnosis due to inappropriately restrictive criteria. Mast cell activation syndrome is a complex, yet often missed, condition that is more prevalent in those with hypermobility disorders.
3. Participate in one, two or all three Facebook Live Events on the Hypermobility MD Facebook page, happening Wednesday, May 20. Sessions will be recorded and made available on the Bendy Bodies YouTube Channel as soon as possible following each event. Be sure to attend live to get your questions answered.
"Attaining Optimal Sexual Health with Hypermobility" with Dr. Becky Lynn, Board Certified Gynecologist, world-renowned expert in sexual medicine and menopause and Director of the Evora Center for Menopause and Sexual Health. Dr. Lynn is also an Adjunct Associate Professor of Obstetrics and Gynecology at Saint Louis University School of Medicine. Wednesday, May 20, at 10 AM EST.
Q&A with Diana Jovin, editor of Disjointed - Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Wednesday, May 20, at noon EST.
"Hypermobility in Dance", with Lisa Howell. Lisa and I will be tackling your toughest questions so don't miss it! Wednesday, May 20, at 6 PM EST / Thursday, May 21, at 9 AM in Sydney, Australia.
4. Sign up for the Hypermobility MD newsletter so you won't miss upcoming events and activities. Hint....Bendy Bodies' guest cohost Jennifer Milner and I have a special surprise for you to finish off EDS and HSD Awareness Month in style!
What have you done this month? How have you gotten more informed, gained understanding, or educated others? I would love to hear from you in the comments.
Dr. Linda Bluestein