Experiences of Working With Sickle Cell

For my hourly work position, I have the pleasure of working in two different, yet collaborative settings.  I am a student worker for the Pediatric Sickle Cell Department at the Children’s Hospital of Pittsburgh of UPMC, as well as a program assistant at Children’s Sickle Cell Foundation, Inc. (CSCF,Inc.) Working in a dual capacity allows me to learn about sickle cell disease in a clinical setting, as well as from a community advocacy standpoint.  Both perspectives have made for a valuable experience with regards to genetic counseling during my first year.  

Children's Hospital of Pittsburgh.

In the clinical setting, I have had the opportunity to shadow the pediatric sickle cell team members during their clinic days. I have learned about the clinical management of sickle cell disease and other hemoglobinopathies. The department is responsible for sending out letters for positive newborn screen results for sickle cell trait. This is one of my primary tasks along with managing the clinic’s sickle cell database, and keeping our patients’ clinic visits, medications and referrals up to date. This summer, I had the opportunity to provide pre-test counseling for University of Pittsburgh student athletes for the mandatory NCAA sickle cell trait testing. My supervisor and mentor is Dr. Cheryl Hillery.  She is enthusiastic and open to my participation in any and all clinic activities.  She is currently guiding the development of my thesis topic, which focuses on the medical transition from pediatric to adult care for young adults with sickle cell.  This transition occurs between the ages of 18 and 22 and is often a busy and challenging time for this age group. Having a potentially life-threatening, chronic illness to manage can be a source of anxiety for these teens and young adults and it can be intimidating to meet and interact with a new set of care providers in the adult setting.  

In addition to working in the clinic, I typically work one day a week assisting the Program Director, Heather Tucker, with providing programs for children and adults with sickle cell disease through Children’s Sickle Cell Foundation, Inc., a non-profit, community-based organization in Pittsburgh. We work as a team to plan and execute programs and activities for children with sickle

An image depicting normal and sickle-shaped red blood
cells. Photo from the Mayo Clinic.

cell disease and their families. Our most recent event was the annual Sickle Cell Fun Day at Kennywood amusement park.  Earlier this summer, we spent the day with our families, provided a catered lunch for the families along with fun activities like bingo and raffles for those who were not as interested in going on amusement rides.  Our Saturday SMASH Sickle Cell Wellness Program, (SMASH stands for Stay Motivated, Active, Smart and Healthy) is growing steadily.  One activity we made available to families during the summer months was the Learn2Swim program that provides children and their families access to swimming in a heated pool(This is important for individuals with sickle cell disease; exposure to cold water can trigger a sickle cell crisis.).  During the school year, the focus is on education and coping along with various physical activities. Year round, we provide free tickets to plays, sporting events and museums around the city and all of these programs are open to children with sickle cell disease and their families, providing much needed family time.  I enjoy meeting the families and getting to know them. In this role, I am also able to learn administrative skills by managing our Facebook and Twitter pages and by designing the monthly calendar that is sent to families who are part of our community.

Through interacting with the staff and families of CSCF, Inc. I have learned how sickle cell disease affects kids and adults from a personal standpoint. I get to hear their stories and work for an organization that works to provide them the resources they need in order to succeed and continue “Living Well with Sickle Cell®.”

-- Emily Mazzei, Class of 2018