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See Josie Smile: Life with Ehlers-Danlos Syndrome (EDS)

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See Josie Smile

Keeping A Smile with Ehlers-Danlos Syndrome (EDS)

I’m Josie and I’m a 25 year old wife and mother with Ehlers-Danlos Syndrome (EDS). EDS is a degenerative genetic condition that makes my collagen deficient. Collagen is the basic building of all of the tissues in your body so EDS impacts all of my body systems such as circulatory (heart and veins), respiratory (breathing), digestive (eating, nutritional absorption, motility, etc.), nervous (brain, nerves), ocular (eyes), musculoskeletal (muscles, bones, tendons, ligaments), integumentary (skin), immune (preventing illness and infection), endocrine (hormones), and reproductive (uterus and ovaries). EDS also causes other conditions that are called comorbidities. I have over 35 known and formally diagnosed comorbidities associated with EDS and I am still collecting more. Because EDS is rare there isn’t much that is known about it. I was diagnosed properly with EDS at the age of 16 after 7 years of searching for the cause of my medical issues and many misdiagnoses (Fibromyalgia, MS, Celiac, and more).

How I Slow Ehlers-Danlos Syndrome (EDS) Progression

Since my diagnosis 9 years ago my condition has progressed. EDS is a genetic condition so there is no way to cure it or to stop my body’s degeneration. However, I now have more knowledge of my conditions and how I can slow the progression to hold on to as many good days as possible. I manage my diet, exercise, medications (including cannabis #reeferforrelief), doctor’s appointments, rest, mental health, and so much more on a daily basis. It’s not always perfect, but I’m always trying. I don’t know how long I will be here or how many of my days will be good, but I’m going to make the most out of it and take a bite out of life. Always keep a smile!

Please follow @seejosiesmile to learn more and follow Josie’s journey.

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