May is Ehlers-Danlos Syndrome Awareness Month and the EDS Zebra Club members want to do our part in spreading awareness.
This Member Spotlight features Emily who shares about her journey to a diagnosis which emphasizes the importance of spreading awareness of EDS.
“When you go to the doctor, you expect answers and treatments. That isn’t a luxury for us all. Education and awareness are key, and patients shouldn’t have to educate doctors, but we are.
In the last year, I was diagnosed with 5 chronic illnesses, almost all of them being invisible. 4 of them are also comorbidities of EDS. The reality of the onset of symptoms of this condition isn’t pretty. My life flipped upside down and some days, I still feel sideways. Things I’ve done my whole life, I can’t do right now. My body isn’t letting me hike or kayak or do anything of the sort. I was the person that never stopped doing. Now, I don’t look sick, but some days it hurts to walk and is hard to get my joints working. Some days, I drop everything I pick up. Some days, I get really sick out of nowhere. Looking back, if a doctor told me that my hypermobility meant more than my joints bending more than they should, I could have prepared better. I could have educated myself more. If a doctor would have looked at the whole picture of my stomach issues, my easy and random bruising, my hypermobility, my “female problems”, and connected the dots, I could have had a diagnoses long ago.
I’m still “new” to this, even though I’ve had this condition my whole life, I just learned to work around it and brushed off symptoms as much as possible. I now know I have to advocate for myself harder than others. I have to push doctors to even listen because “I don’t look sick”.
And with every bit of awareness raised, that’s one more Zebra that can be validated earlier, that can work to get back parts of themselves that they lost along the way of this condition.”
