This Social Worker is Transforming the Lives of Rare Disease Patients

Maya Doyle is a health social worker specifically focused in pediatrics and the transition from pediatric care to adult care. She has been practicing for twenty years. Now, she works as an associate professor at Quinnipiac.

Her experience in healthcare in a hospital setting gave her a deep interest and empathy for children facing rare conditions.

Maya’s doctoral dissertation focused on cystinosis, a rare lysosomal storage condition which leads to a buildup of cystine through the body. Her dissertation won they dissertation of the year award from the Society for Social Work and Research.

More recently, she won the 2021 Faculty Scholar Award as a result of her dedication to research in rare disease, pediatrics, and medical social work.

For the last 6 years she has specifically focused on X-linked hypophosphatemia (XLH), a rare endocrine condition. This rare disease leads to defective bone mineralization and in childhood, patients face rickets. Most XLH patients are diagnosed as children, but as they age the condition only becomes more debilitating and painful. Maya and her colleagues recently published “Giving Credence to the Experience of X-Linked Hypophosphatemia in Adulthood: An Interprofessional Mixed-Methods Study.”

Teaching The Future

Maya’s research is not just meaningful for what she has done for patients. It is meaningful because she has mentored each of her students to bring the same type of empathetic dedication to their work.

The patient is at the heart of it all.

Maya emphasizes that she preaches to her students that listening to the patient, their story, and their life experiences is paramount. Only then may they begin to discuss care plans with the rest of their health team. This is another critical part of the job. Maya explains that you must learn how each of the individuals involved in health team perceive the world and how best to engage with them.

A group of her students are collaborating with her on her next project. This project in XLH will begin with interviews with patients and their families. It aims to uncover how patients work to understand their diagnosis, and their potential to pass it on to their children.

She explains that for social workers, you must be a stellar communicator, understand mental health and its potential impact for patients and their families, and a dedicated researcher.

Maya says it’s vital to be up to date on research, the current studies, and what could benefit current clients.  

Rare Diseases

Rare diseases are on Maya’s heart. She makes a special effort to connect with those living with a rare condition. For instance, each year she participates in Quinnipiac’s Rare Disease Day.

In fact, along with Carolyn Macica, PhD, she started it.

Maya explains how rare diseases aren’t quite that rare. Individually, they don’t affect many people. But together, they’re much more common than you might think. In the United States, she says, it’s about equivalent to how many people have diabetes or cancer.

Social work in rare disease is just as critical.

You can read more about Maya Doyle and her work here.

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