Social workers are essential members of the multidisciplinary care teams at hemophilia treatment centers (HTCs). As counselors and advocates for people with blood and bleeding disorders and their family members, they help people navigate a wide range of issues, including health insurance decisions, school-related matters, and mental health challenges.
In honor of Social Work Month, we asked a group of social workers who work at HTCs (and one who recently retired) to share what led them to work at an HTC, what they love about their jobs, and the advice they have for newly diagnosed patients and families who are feeling overwhelmed.
Why Did You Choose to Work at an HTC?
“I was a brand-new social worker, and the HTC at my hospital was looking for an MSW. It was only four hours, but I was needing to pick up extra time. After four years, the grant moved over to the children’s hospital, and I moved on too. But 10 years later, I was thrilled to return to my home state and learn that the HTC at the children’s hospital was hiring a new full-time social worker. So much had changed since I had originally worked there, like prophy treatment and a very safe blood supply. I love when life makes a complete circle, and I was so happy to be back at the HTC again and learn that some of the social workers and other staff that I had known back in the ’90s were still around.”
— Susan Earl, MSW, Utah Center for Bleeding & Clotting Disorders at Primary Children’s Hospital, Salt Lake City
“The comprehensive care model drove my desire to work at an HTC. Coming from years of working in oncology, the multidisciplinary model was ingrained in my practice, and working at an HTC took my practice and passion for the comprehensive care model to a new level.”
— Bryn Dunham, LCSW, University of Colorado Hemophilia and Thrombosis Center, Aurora
“A former co-worker recruited me for the position. I was intrigued when I interviewed at Rush and was told that the emotional health of the patient was equally as important as their physical functioning.”
— Lucy Ramirez, MSW, LCSW, Rush Hemophilia and Thrombophilia Center, Chicago
“In my experience, the social work role is very supported within the HTC setting, and that allows me to work at the top of my clinical skill set. I love the interdisciplinary team aspect (getting to learn from disciplines as well as teach other disciplines) and that we all seek to support the whole person, not just the bleeding disorder.”
— Amy Wilson, LICSW, M Health Fairview Center for Bleeding and Clotting Disorders, Minneapolis
“I had the privilege to work for a statewide nonprofit called the Hemophilia Council of California as a social worker/health educator for 12 years (1988-2000). During that time, I got to learn about hemophilia, courage, perseverance, loss, grief, and resilience from people with bleeding disorders and their family members. It was a profound odyssey, both professionally and personally, that I shall never forget. When the social worker at the University of California San Francisco Medical Center’s HTC decided to leave, she encouraged me to apply for the job. I stayed there for 21 years, retiring at the end of 2021.”
— Dana Francis, MSW (Retired), University of California San Francisco Hemophilia Treatment Center, Adult Hemophilia Program
What Do You Love About Your Job?
“I love our patients, their families, the community, and my colleagues. Every day presents something new — new opportunities, new challenges, new lessons, new chances to do something meaningful.”
— Jennifer Borrillo, MSW, LCSW, MBA, Louisiana Center for Bleeding and Clotting Disorders, New Orleans
“I have an opportunity to have a meaningful, significant, and long-lasting impact on our patients, families, and their wider communities. Coming to the bleeding disorders community felt like falling into a different world. You get to know patients and their families. You have an opportunity to know their dynamics and see how what you do supports them and helps them in leading healthy, happy lives. There is never a sense that you are doing things on your own, because you have a good team behind you at your HTC.”
— Alfredo A. Narvaez, LMSW, Louisiana Center for Bleeding and Clotting Disorders, New Orleans
“I love learning from our patients about how they cope, and how they build a life that’s meaningful, even when that means having to accept certain physical limitations. Hearing their stories and the stories of family members helps me understand their lives and the complexities — medical and psychosocial — of living with a chronic disorder. These stories also model and teach grace, which obviously is not clinically measurable. Learning about bleeding disorders research, particularly gene therapy, is interesting and exciting.”
— Cat Stulik, LICSW, Washington Center for Bleeding Disorders, Seattle
“Getting to work with our patients across their lifespan and working with generations of family members who are touched by bleeding disorders is a rare opportunity in health care, which I greatly appreciate. It allows me to witness our children learning about their bleeding disorders, becoming confident and independent enough to self-infuse. It is truly inspiring. Finally, having the chance to participate in research and plan events and projects with HTC social workers across the country has taught me a great deal about what is possible to achieve if we pool our talents together.”
— Lucy Ramirez
“Hands down, No. 1, it’s the patients and families I have the privilege of working with day in and day out. I feel so lucky to be able to form long-term relationships with such cool people, and to help not only with life’s challenges but also celebrate life’s triumphs with them.
In addition to that, I work with equally dedicated professionals in this field. The team at my HTC is amazing and supportive. The larger network (nationally and internationally) of psychosocial professionals is full of knowledge, highly dedicated, and collaborative. This is unlike any other medical social work job, and I learn something new every day.”
— Amy Wilson
“I love listening to patients’ stories and following them through their different life stages. Working at a lifespan center, I have the opportunity to meet newborn patients as well as follow patients through their more advanced years. In listening to their individual stories, I am able to bring those stories into patients’ current views and life experiences. I also love the professionals I collaborate with every day. I’m so lucky to work with a diverse group of passionate care providers who come together to provide superior patient care.”
— Bryn Dunham
“The thing I loved most about my job was the opportunity to develop long-term relationships with patients. I had the privilege of knowing some people (in my professional social work capacity) for 33 years! I got to offer practical and emotional support to them as they traveled through the hills and valleys of their lives. I developed relationships with their family members and learned a great deal from my experiences. I also loved the long-term professional relationships with my HTC team and with my social work colleagues around the country. I served on the NHF Social Work Working Group twice, from 1993-1997 and again from 2013-2017. I’ve met so many amazing people during my time as a social worker in the bleeding disorders community, locally, nationally, and even internationally.”
— Dana Francis
What Advice Do You Have for Newly Diagnosed Patients and Their Family Members?
“Understand that there are times when dealing with a chronic health condition can be stressful and overwhelming, especially one that can be as unpredictable and complex to treat as a bleeding disorder. Your HTC providers are there to help you cope and will give you the tools that you need to live with the diagnosis as well as prepare for crises that may come up. I remind families that communication is the key and that they should not stew alone if they have concerns.”
— Lucy Ramirez
“You are not alone. Feeling overwhelmed can be temporary, and there is help to manage the stress that accompanies a new diagnosis or any resulting challenge that comes up over time. Connection with others can be immensely helpful! Your HTC social worker and other support staff are here for you. Even if you don’t have a concern now, you may at another time. So, getting to know your care team as soon as you can could benefit you in case something does come up in the future.”
— Amy Wilson
“Take a deep breath and join the bleeding disorders community. I’ve heard it described frequently as a family, and it is really true. Though the first time joining can come with concern and worry for the unknown, I haven’t yet heard from a patient or family member that they regret joining. There are many options. Explore what is available and take a chance — you won’t regret it!”
— Bryn Dunham
“It’s important to practice mindfulness and being in the moment. So much of anxiety and stress is about worries of the future or regrets of the past. When we can practice being in the moment, we can learn to control our fears and practice gratitude and lessen distractions that can keep us from experiencing the love, peace, and joy that’s always present in our lives.”
— Susan Earl
“Reach out to a social worker at your HTC for referrals to therapists and/or therapeutic groups in the community. Engage with your local National Hemophilia Foundation (NHF) chapter for information on workshops, retreats, and other gatherings within the bleeding disorders community. If you don’t have a local chapter, reach out to the NHF.”
— Cat Stulik
“There is no community like the bleeding disorders community in terms of building support, education, encouragement, and a sense of unity. This is not a journey that any patient or family member has to take on their own. From HTCs to state and local organizations to organizations such as NHF, World Federation of Hemophilia, Hemophilia Alliance, and more, there are countless friendly, helpful, and involved people ready to assist, to educate, and to encourage. And they all have the same goal: to help patients lead the happiest, healthiest lives they can.”
— Alfredo A. Narvaez
“Don’t isolate! Plain and simple. Take a deep breath and reach out for emotional and medical support. In this technological age, there are always opportunities to connect with other patients and families who are going through similar experiences. Develop connections with your HTC team. Reach out to your local hemophilia organization. Attend events and meet people. If you are trying to cope with your child’s diagnosis, ask your HTC to recommend another family that can offer you support and strategies to help your child and your family. Don’t be afraid to reach out. It really helps to not feel alone on this journey.”
— Dana Francis
“First, I would say you’ve got this, and you are not alone. Feeling overwhelmed and stressed is nothing to be ashamed of, and a completely normal, expected, and human response. Your child may have this diagnosis, but with that comes an entire community of support and resources. Get connected with a federally designated HTC wherever you live, as well as the local NHF chapter in your area. Make connections, ask questions, learn as much as you can, but know there are experts specialized in your child’s diagnosis and a proven, comprehensive model of care that can and will be with you as you navigate your child’s care. Lastly, take time to enjoy life, relax, care for yourself, and love that beautiful, amazing child of yours.”
— Jennifer Borrillo