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I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2018 at age 33. I had at this point had symptoms my entire life (hypermobility, headaches, joint pain, fatigue, gastrointestinal issues, autonomic intolerance etc.), but no one had pieced together my jigsaw.
In 2015 I was pregnant with my first baby. I had a very difficult time being pregnant, gastrointestinal and pain were my primary complaints. Pain beyond what is considered normal in pregnancy. Still no one put the pieces together. My general physician who I was seeing at the women’s hospital, actually said to me, ‘you just have an achy body type’. This was a moment where I was led to believe that I just needed to harden up. That maybe I was complaining too much.
My second pregnancy came soon after my first, four months later to be exact. Probably not the most ideal for a hypermobile, achy body type. But I had been led to believe that there was nothing overtly wrong with me. So I pushed along with a second, awful and painful pregnancy, and my second beautiful baby boy was born not long after my first son’s first birthday.
I tracked along ok-ish after this, making small gains to strengthen and restore my body. All the while knowing there was much more going on with me that I had been led to believe. I developed glandular fever when my youngest son was just 15 months old and this was the tipping point for me, where my EDS symptoms went from moderately severe to extremely severe. I suffered almost instantly a severe worsening in craniocervical instability symptoms. Symptoms that I would soon learn were a result of acute and severe basilar invagination.
Prior to my decline in health, I had started a career as a hospital-based clinical pharmacist. I have since had to hang up my lab coat as my symptoms prohibit me from safely practicing.
I have developed the health advocacy brand, Zebra Blends which is primarily focused on raising awareness of Ehlers-Danlos syndrome and its associated comorbid conditions. I hope to have a positive impact and effect in the arena of rare disease research and advocacy going forward.Tags: advocacy, awareness, craniocervical, hEDS, hypermobile EDS, research
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