Living with a Rare Disease is Hard on Mental Health

Living with a rare disease as a child can be an extremely difficult and isolating experience. As a result of my health conditions, I looked and acted differently from other kids my age. My rare genetic condition, amelogenesis imperfecta, causes incomplete or missing tooth enamel, which meant I experienced pain while eating, talking and even breathing. I also live with a second rare disease called platelet storage pool disease, as well as chronic illnesses, psychological disabilities, learning disabilities, and auditory disabilities, including auditory processing disorder and hearing loss. As a kid going through these challenges, it would have been helpful to have someone to talk to about living with a rare disease to tell me that I wasn’t alone in experiencing the challenges I faced. That’s part of why I am now a contributor on The Mighty, to help tell my story in the hope it helps someone else to see that representation.

In part because of my rare disease, I was fascinated by mental health, emotion and psychology and how those intersected with chronic and rare diseases. Unfortunately, I lost my close friend, a fellow rare disease community member, to suicide, and I remember thinking, “Is there anything I can do to help people like him? Like me?” Despite my passion for these areas, I still felt like it was a path for “other people” to pursue, because I thought I had all these barriers and limitations that prevented me from achieving that goal. But as I completed my coursework at community college one class at a time with the help of disability services and accommodations, and after I was nominated by faculty to work in the writing center, I started to think maybe I could do it. I started to believe it was possible to pursue my dream.

What the #RAREis Scholarship Means to Me

After community college, I transferred to the University of Toledo and got the opportunity to work in a social and health psychology research lab and a clinical psychology research lab. This gave me the opportunity to combine my interest in mental health with my love for writing, research, teaching and helping other people. I received mentorship from my professors and the graduate students I worked under that also significantly contributed to my success and development. I started developing my interests, skills, and my goals, refining what my calling really was and how I could pursue it.

The #RAREis Scholarship helped change the trajectory of my life, giving me the opportunity to take the next step in my education to pursue my master’s in clinical psychology. I’m now able to work in the Mood and Emotion Regulation Lab at Cleveland State University, where I research emotion regulation and related difficulties (e.g., borderline personality disorder) and the relationship between chronic illness and emotion. This is the best master’s program in the U.S. for what I want to do, and I’m getting the chance to be a part of it. I’m able to pursue my passion and do exactly what I wanted to do; it’s like a dream come true, and the #RAREis Scholarship helped me get here.

About Amelogenesis Imperfecta

Amelogenesis imperfecta is a group of rare, inherited disorders characterized by abnormal enamel formation and affects 1 of 14,000-16,000 children in the United States. Researchers generally classify amelogenesis imperfecta (AI) into four main types and 17 recognized subtypes. As a result of missing or incomplete tooth enamel, people living with AI are susceptible to periodontal issues, such as diseases of the tissues surrounding teeth (gums, cementum, ligaments, etc.). Teeth are also generally sensitive to hot or cold temperatures, and tooth sensitivities can lead to continuous severe pain. In addition, psychological impact of the disease can be great due to cosmetic and treatment-related issues.

About the #RAREis Scholarship

To support people living with rare disease while navigating obstacles to education, #RAREis and Horizon have partnered with the EveryLife Foundation for Rare Diseases to establish the #RAREis Scholarship Fund. The program will provide a one-time scholarship grant of $5,000 to up to 53 adults to pursue educational enrichment opportunities, including accredited courses, trade programs and two-and four-year degrees.

Applicants for the scholarship must be 17 or older and a resident of the United States who have been diagnosed by a physician as having any form of rare disease, regardless of treatment status. Applicants must plan to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall 2022 semester. There is no minimum amount of credit hours to be part-time. Students do not need to be pursuing an undergraduate or graduate degree. Applications for Fall semester 2022 are now live. For more information, visit

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