Emily Cram’s Journey of Courage and Advocacy Living with ERBIN
In a world where many illnesses and disabilities are invisible, Emily Cram stands as a beacon of strength and advocacy. As the only woman in the United States diagnosed with ERBIN, a rare connective tissue disorder, Emily’s journey is one of profound challenges, unwavering resilience, and a powerful commitment to changing perceptions about invisible disabilities.
Unraveling the Mystery of ERBIN
Emily’s story with ERBIN began in early childhood, though its daily impact didn’t become apparent until she was around 12 years old. ERBIN, pronounced “Urban”, was officially named in 2017, a moment Emily had the unique opportunity to witness alongside the professionals who named it. This genetic condition runs in her family, with her father, brother, and herself all diagnosed with three aneurysms on their ascending aorta. Tragically, she believes her grandfather and uncle also suffered from the condition, passing away at young ages.
The journey to diagnosis and management has been a long and arduous one. Emily credits her “wonder woman” mother for tirelessly fighting to get them into the National Institutes of Health (NIH), where they now contribute to vital research on health and immunity in connective tissue. The NIH has been instrumental in helping them “stay healthy and alive, to be frank.”
The Invisible Burden: Challenges of a Rare Disease
Living with an invisible disability presents a unique set of challenges. For Emily, daily joint dislocations became a painful reality at age 12. “I would wake up and my shoulder would be outta place or I couldn’t walk to class,” she recounts, describing how friends would often wheel her between classes. The physical pain was compounded by the emotional toll of disbelief. “Nobody believed me because I looked like I was healthy, but I was in so much pain,” she shares. Even health professionals initially struggled to understand, with some suggesting her pain was “in my head,” leading to feelings of invalidation and guilt.
Emily’s experience highlights a common struggle for those with invisible disabilities: the constant need to justify their pain and limitations. She found solace and strength in running and yoga, activities many professionals advised against. Yet, by building muscles around her joints, she could maintain her body’s stability. “It looks like I run because I’m normal, but really I run to feel normal,” she explains, underscoring the deep commitment required to navigate her day-to-day life.
The impact extends to relationships as well. Simple illnesses like the flu can mean three months out of her life due to an inefficient immune system, leading to canceled plans and feelings of unreliability. The “fear of missing out” (FOMO) has been a constant companion, particularly after missing 89 days of school in seventh grade. “It feels like I am almost indebted to my sickness based off of what it has pulled me from,” she admits.
Finding Identity and Advocacy
Despite the immense difficulties, Emily has embarked on a powerful journey of self-discovery and advocacy. She grappled with where ERBIN fit into her identity, learning that it’s “part of your identity,” but not her entire identity. This understanding has fostered a strong sense of self-awareness and the importance of setting boundaries.
Now a sophomore at The Ohio State University, majoring in public affairs and sociology, Emily is driven by a desire to make a difference. Her path was inspired by a Miss America contestant, leading her to pursue a future in government and the nonprofit sector, eventually aiming for law school.
Her involvement as an ambassador for the Invisible Disabilities Association (IDA) has been transformative. It provides invaluable networking opportunities and, crucially, connects her with individuals nationwide who share similar experiences. Coming from a rural small town in Ohio, this connection is vital. “To not only bring my story publicly to my community, but also for myself and for my own healing, to connect to people around the United States, and truly know that I’m not alone,” she emphasizes, highlighting the power of shared stories.
A Platform for Change: Miss America and Beyond
Emily’s participation in the Miss America pageant has given her a significant platform to amplify her voice. Beyond the traditional notions of a beauty pageant, she sees it as an opportunity for talent, public speaking, and personal growth. Initially, her philanthropy focused on trauma-informed care, recognizing chronic illness as an adverse childhood experience. This led her to create a mentorship program pairing young women with role models, focusing on the healing power of relationships. This passion has seamlessly evolved into her role as an IDA ambassador, allowing her to advocate for her specific story and the broader mission of invisible disabilities awareness.
Planted, Not Buried: A Message of Courage
When asked about the one thing that gives her courage to make it through each day, Emily shares a profound message: “I remember a long time ago I was going through such a hard time in my life, and my joint dislocations were getting worse and worse. And I remember just feeling absolutely buried. And one of my best friends said to me that I wasn’t buried and I was planted, and I wasn’t going to suffocate in where I was, but I was actually gonna grow because of it. And I remember that every day from then on.”
Emily Cram’s story is a testament to the human spirit’s capacity for resilience in the face of adversity. Her courage, her advocacy, and her unwavering belief in the power of storytelling are not only changing her own life but also inspiring countless others to find their voice and embrace their own unique journeys with invisible disabilities.