Recognizing the Impact of Helping Just One Patient
As a part of Horizon’s support programs, in my role as a Clinical Nurse Educator, I work with 60+ rare disease patients throughout the country. Through the personal relationships I am able to form with them, the positive impact I can make with this patient community, as well as their families, is immeasurable. This National Nurses Week, I hope we all recognize the significant differences we can make for patients beyond the clinical setting.
As nurses, it's usually easy to explain why we chose this career: for most of us, we just want to help people. While we often focus on the patients themselves, our work can have a lasting impact on the patients' families, as well. This National Nurses Week, as I reflect on my career path and the lessons I've learned along the way, I want all nurses to recognize and remember how helping just one patient can make a significant difference in their lives beyond the care setting.
I've worked in healthcare for over 15 years, including a few years as an ER nurse. While my colleagues loved the excitement of not knowing what each day could bring, and the opportunities to help a variety of patients, I began to crave more intimate interactions with patients. I love teaching people about their health, so I started to explore jobs that would allow me to flex that skill. A colleague of mine was working as a Clinical Nurse Educator (CNE), helping to teach people with autoimmune diseases about their care and treatment. She invited me to join her for a project, and I've never looked back.
I now work as a CNE for Horizon Pharma, a biopharmaceutical company focused on addressing the unmet needs of patients, including those with rare genetic diseases. In my role, I work as part of a support program for people living with chronic granulomatous disease (CGD), one of the 350+ types of primary immunodeficiencies. With CGD, the immune system does not work as it should, leading to repeated, severe infections.
My primary responsibility is to help CGD patients, as well as their families, understand and manage their disease and the treatment plan that their healthcare provider has set for them. Because only 20 children are born with CGD each year in the United States - and it's one of a whole category of similar diseases - the disease can be difficult for even the most experienced doctors to identify. By the time patients are correctly diagnosed, they and their families are often frustrated, exhausted and scared. And because these patient populations are so small, it can be difficult to find people who understand what they are going through.
That's why it's so impactful when I'm able to work with a new patient. I jump in and work closely with the patient and his/her family to teach them about CGD and to help them understand their medication, as well as other factors relating to their disease. While many general healthcare providers are not familiar with CGD, this condition is my sole focus; I am able to provide more in-depth knowledge of what daily life looks like managing this disease, as well as additional support and resources.
Serving as an advocate for these families who will listen to their fears and concerns is a crucial, and very rewarding part of my role. Because I stay with these patients for as long as they are on their medication, I get to watch them grow, often from uncertain newcomers to passionate champions for their new community.
I'll never forget one family who I witnessed go through this transformation. When their young boys were diagnosed and prescribed a treatment plan, I reached out to introduce myself and schedule a visit - but it quickly became clear they were weary and tired of the clinical talk. I understood, and let them know I'd be there for them if they ever had questions or needed help. About a month later, the parents contacted me, asking for help. I'm so happy I was able to show how I could help them. We now regularly keep in touch, and I love watching their boys grow.
I work each day to support these 60+ patients-a miniscule group compared to the number of people who come through the ER each year. Yet I don't feel like I'm making any less of an impact than I was during my time in the traditional clinical setting; through the personal relationships I have formed with my CGD patients, I can see the positive impact I have on their daily lives, beyond their treatment plan. For this small, often isolated community, I am a dedicated voice for their unique needs, and ultimately help them to live empowered with the disease.
After I became a CNE, I came to appreciate how just one "win" with a patient each day can make a lasting difference in their lives. This National Nurses Week, I hope all nurses recognize, no matter how many patients they treat or how big the community they support, there is an immeasurable effect they can have on their patients.Last edit by Joe V on Jun 14
About cathrynwood, BSN
Cathryn Wood BSN, RN, is a Clinical Nurse Educator for Horizon Pharma. She grew up in Australia and is a graduate of the University of Texas at Austin Nursing Program. She lives in Austin Texas
Joined: May '18; Posts: 1; Likes: 5
from TX , US
Specialty: 15 year(s) of experience