As a nurse, Daphne Adelman has two main goals: for her patients to have options and access when it comes to their medication and treatments, and for them to have a good quality of life. Daphne was nominated by Jill Sisco, an acromegaly patient and leader of the patient organization, Acromegaly Community, because she goes above and beyond for her acromegaly patients; her role in their treatments transcends traditional clinical interactions.
Daphne has been a nurse for almost 30 years. She works almost around the clock to meet her goals, whether by diligently ensuring that patient’s prior authorizations go through, aiding research efforts to provide alternative treatments, or helping her patients navigate the often-unfamiliar territory of obtaining the right medication. “If I can make someone’s life easier and help them get whatever they need to live a normal life, then I feel like… I’ve done something.” Daphne’s investment in her patient’s success and hard work to support them and validate their experience embody how important the role of nurses is in the treatment of patients. However, many acromegaly patients still struggle with their condition despite what current medications offer.
Often times, acromegaly patients find themselves in a situation where, even though their hormonal imbalances are addressed, their “big picture” health is not. Many people with acromegaly grapple with the emotional and social aspects of their disease as well as the physical symptoms which sometimes persist despite treatment. As a nurse, Daphne says, “we’re the ones that are there the most for them; a lot of times they’ll vent to us and tell us things they don’t tell their doctors. We can be the bridge between the patients and the physicians.” Working with acromegaly patients has also given her a deeper understanding of how to help patients navigate the initial diagnosis of a rare disease. “Since they’re not as familiar with what they have, it’s all new territory for them. My goal is to make the transition smoother and help them through that journey and process.”
Daphne cemented her commitment to her patients in 2012, when she served as a board member of the Acromegaly Community as a way to promote patient advocacy and ensure that patient voices could be heard. By serving on this board, she has furthered her understanding and empathy for her patients’ experience with their disease, while contributing her medical knowledge to the organization. Daphne is spearheading the dialogue between patients and providers to create a better quality of life for her patients. As a caring, compassionate nurse with a drive to meet the multi-faceted needs of acromegaly patients, Daphne highlights what it means to really be a Rare Disease Difference Maker™. She describes her experience on the Acromegaly Community board as a transition “from a healthcare provider to really becoming a resource and being a part of helping the community.”
Who’s made a difference in your rare disease? Whether it’s a teacher, parent, pastor, friend, or physician, if you want to recognize someone who has impacted your life, click here to nominate them! Not only do we hope to recognize those who have made a difference in the rare disease community, it is our hope that these stories motivate others with practical inspiration for how they can make a real, lasting impact in the community.