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Emma Jordan (She/Her)

State: Florida

Chronic Conditions: Postural Tachycardia Syndrome (POTS), Endometriosis, Polycystic Ovary Syndrome, Arthritis, IBS, Migraines, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Degenerative Disc Disease, Femoroacetabular impingement (FAI), Celiac disease

My heath journey began when I was first born with four separate heart issues that almost ended my life right after it had just begun.

Growing up as an active kid in Florida, I was always running around outside getting hurt, but a lot of that we thought to be just typical childhood clumsiness (which i've never grown out of) and growing pains (from growing 6inches taller in the span of a year in middle school).

It wasn't until I started high school and my third year of competitive rowing that I really encountered major health challenges. The first one being a torn labrum in my hip that required surgery. Then needing a discectomy in my back after barely recovering from my hip. Then needing another labrum repair surgery in my other hip because i tore it in physical therapy from my last surgery.

This was all while I was trying to navigate high-school and figure out college, but it was also the start of my EDS journey.

My family and I started asking how could someone as young and active as I was, be experiencing so much pain and bodily injuries.

It wasn't until 2018, that I saw a geneticist who had an answer for me, and his answer was hEDS. As the years have passed i've continued to have a surgery a year, racking up 10 under my belt at this moment in time. I've also come to rack up some comorbidities such as MCAS, POTS, Endometriosis, PCOS, Mastocytosis, DDD, Raynauds syndrome, Arthritis, IBS, Celiac, and more! And I'm only at the ripe age of 25.

I advocate because I wish there was this sort of information out there, easily accessible, and applicable, for any/every body. I advocate because I want to see some change in my lifetime. I advocate because no one should have to live poor, and in pain, yet this is a harsh reality for many disabled and chronically ill patients. And finally, I advocate because after my diagnosis, I was so grief stricken about losing my ability to attend college, that I just sat and moped around wishing a new life path would would just drop into my lap. Scrolling through instagram late at night, i stumbled upon some advocacy programs, such as CDC, so I decided to apply, even though I had little to no real experience, but was eager to get my foot in the door so I could gain some!!