Today is National Rare Disease Day: a day all about spreading awareness for rare/invisible medical conditions!
January 30th, 2017 will be a date I never forget, the day I finally had answers and my life changed forever (both good & bad). I was diagnosed with Ehler Danlos Syndrome (EDS). EDS is a genetic connective tissue disorder. Connective tissue is the “glue” that holds us together to support the skin, bones, blood vessels, other organs/tissues. With EDS, we often deal with chronic pain, soft/stretchy/fragile skin, over flexible joints, joints dislocating out of place frequently, and fragile body tissues/blood vessels, just to name a few.
I also have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia that affects the flow of blood through my body, which also effects my autonomic nervous system, causing portions of my body to not function correctly primarily my heart. Leading me to have fatigue, dizziness, fainting episodes, nausea, and brain fog just to name a few.
With having both conditions its often hard to explain what I go through daily. Its best to be thought of having the flu or a hangover 24/7, getting hit by a bus at the same time, feeling like a 45-year-old in a 20-year-old body, and the feeling that you are constantly disappointing people because you have to cancel plans at the last minute when you are in too much pain, too sick, or too depressed to leave your house.
During this past month, I have been going through the grieving process. Realizing that there will be things I won’t be able to do because of this diagnosis, the realization that I will never be “normal” and that my life will be different. But through this past month I have been blessed to have met amazing people, learned that I am stronger/wiser than I appear/think, and that my faith is amazing!
My goal is that through speaking out about my rare/invisible conditions (Ehler Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome) that more attention is brought to it and research can be done on how we can improve the lives of everyone battling these conditions. I do not wish these conditions on anyone and hope that one day there is a treatment and cure! If you have any questions please contact me, I’m more than willing to talk about it. Please share & help spread awareness!
