“The diagnosis of albinism can be confusing for parents, and adjusting to life with the condition can be difficult for affected children,” wrote Brittany Kronick in her September 2016 article published in The Journal for Nurse Practitioners. Her article focuses on pediatric primary care management of children with oculocutaneous albinism 2 (OCA 2), however she is also writing from her own experience.
“I have albinism, OCA, and I’ve always wrestled with how it fit into my life,” said Brittany, who holds an MSN degree and is the pediatric nurse practitioner at New Alternatives for Children, which provides services in support of birth, foster and adoptive families caring primarily for medically fragile children in New York City.
“As a teen I had extra angst,” Brittany said. During her sophomore year, her eyes re-crossed (strabismus), and she felt isolated and angry that she had to deal with a problem that her peers didn’t understand. “Adolescents may focus on potential future obstacles because of others’ lack of understanding of their capabilities,” she stated in her article. “Visual impairment can increase the risk of social exclusion or low community participation.”
These experiences left an impression on Brittany and she decided she is uniquely qualified to do something about it. In her current role at New Alternatives for Children, she provides and manages the medical care for some of New York City’s neediest children. She attributes her success in working with this group to her ability to treat each person with respect and let them know they are not alone.
“I was the only one in my family who has albinism,” Brittany said. “I have a supportive family, but they didn’t quite understand what I could and couldn’t do. So, I’ve been adjusting to life on my own.” She is now working on her doctorate in nursing practice from Columbia University.
Brittany recalled milestones from her youth that reinforced her path of independence. She learned how to read books with regular size print, rather than enlarged print. She participated in gymnastics for 10 years and reached a competitive level. She also played on a baseball team. She said she experienced the most frustration when doctors told her “you can’t.”
“Just to limit someone because they have a condition seems pointless,” she said. “As a clinician, if I tell a parent that their child can’t do something, then they don’t push their children to their fullest potential. That doesn’t seem right.” She added, “I never felt pushed beyond a point of what I could do. I’ve always been motivated. Living with albinism is stressful no matter what.”
Brittany is living proof that a condition like OCA does not have to define a person’s inabilities, but it can contribute positively to a person’s abilities.