Model: Allison Kladler
Renal Nutcracker Syndrome (NCS) and Ehlers Danlos Syndrome (EDS)
My name is Allison Kladler. I am a 21 year old from the small town of Gloucester, Virginia. I am currently working on my Master’s degree at University of Miami in the area of marine conservation and biology. I have battled with my health throughout my life but am newly diagnosed with Renal Nutcracker Syndrome (NCS) and Ehlers Danlos Syndrome (EDS), along with a few other chronic illnesses. Renal Nutcracker Syndrome is a vascular compression disorder where the left renal vein becomes compressed between two arteries. Ehlers Danlos Syndrome is a connective tissue disorder that affects every aspect of the body.
Over a short period of time, I went from being a division one college track and field athlete to struggling to function daily. Both of these syndromes are considered rare diseases and severely lack the knowledge to be treated or even understood by most specialists. After being diagnosed with NCS, I had to travel to several states looking for someone who would listen and not just judge my health by a quick glance. I seriously wish I had a dollar for every time someone told me “but you don’t look sick”. Doctors are often taught “when you hear hoofbeats, think horses not zebras.” Zebras have thus become the symbol for rare diseases and are the reason behind my outfit choice. I am choosing to show my stripes in celebration of my uniqueness and in support of the approximately 300 million people, like me, living with rare diseases.
Living with “invisible”, chronic, rare diseases has taught me how easily pain can be hidden. It’s much simpler to pretend to feel fine in an effort to fit in in college, but I have learned it is better to be your authentic self. Just like my portrait, sometimes you have to put life on pause, close your eyes and take a deep breath.
Photographer: Adriana Novello