Look up the words, tough, or resilient in the dictionary and you may just find Abbey Hauser’s photo there. Abbey is an athlete who has ran, and finished, the Chicago Marathon, enjoys trail running and loves to train. But what sets Abbey apart from others is not her passion for running, but the fact that she’s an athlete living with, and overcoming, Ehlers-Danlos syndrome, or EDS.
EDS is a group of rare genetic connective tissue disorders. Symptoms include; joint hypermobility resulting in easy dislocations, smooth velvety skin that is overly elastic or stretchy, frequent bruising, abnormal scarring, joint degeneration and chronic pain.
Abbey’s family first realized something was amiss when, at age seven, she dislocated her knee simply by rolling over, only to dislocate it again two months later just by lying down to color. “I’ve dislocated my shoulder holding a door open for a stranger, dislocated my knee while coloring as a child or just rolling over in bed, I’ve developed stress fractures in my spine from just the stress of gravity, and have survived countless other injuries caused from simple tasks,” Abbey explains.
Some might consider Abbey’s body to be fragile, too fragile to lead a normal life. Abbey disagrees, “I refuse to be defined by the genetic mutations that have weakened the collagen holding my body together. My body will always be unstable and fragile, but my limitations do not determine who I am.”
When not busy leading an active lifestyle, Abbey is an advocate for those living with rare diseases. Abbey writes about her experiences and those of other rare disease fighters in her blog Owning My Story. “I urge anyone working in rare disease advocacy or health policy to take the time to listen to rare disease patient stories. The rare disease community may sound small, but as we come together to share our stories, our strength grows” Abbey says.
Please join Engage Health in honoring Abbey Hauser as our newest Rare Disease Difference Maker™. Who is your Rare Disease Difference Maker™? Nominate them here!