By Ellen Lenox Smith

Lately, I feel like we are all living in the twilight zone. These changes to our daily lives are major and, at times, confusing and overwhelming to cope with. Those of us living with chronic, painful medical conditions are already living a life that is complicated and on the edge. For me, living with Ehlers-Danlos syndrome (EDS), a simple tight hug or slip and fall can actually become deadly. So, each day is already a challenge and I must constantly remain vigilant to remain safe.

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Ellen and her husband, Stu.

By Ellen Lenox Smith

People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to the hospital, due to a lack of understanding amongst the staff on how to safely care for them.

Last year, I had a negative experience in the emergency room (ER), one that almost killed me.

In the process of being admitted, after passing out over and over due to low blood pressure, things went terribly wrong. While being transferred from the ambulance to the hospital stretcher, my hip was dislocated. This dislocation was unintentional, but avoidable, as it was a direct result of the rough way the transfer was managed.

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Ellen and her husband, Stu.

By Ellen Lenox Smith

In this second part of my series on living with EDS, I wanted to share these safety tips that I have learned to follow that I hope will help others, like myself. (You can read the first part here.)

Please note the information in this post should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents my opinions alone.

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By Ellen Lenox Smith

Everyone’s journey living with Ehlers-Danlos syndrome (EDS) is different, making it difficult for the medical community to learn how to help us. There are 13 different subtypes, with various levels of severity and impact. While some are able to live a decent life with little pain, others cope with constant subluxations and even dislocations. Some patients also have involvement of the spine and spinal cord, such as tethered cord, instability of the neck, and Chiari I malformation.

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