FA Connect: Living and Coping with Fanconi Anemia

FA Connect: Living and Coping with Fanconi Anemia

Feb 18th, 2021, 10:00 AM



Being a patient with FA or a having a loved one with FA can be very difficult. This talk will focus on 1) some of the normative coping challenges that families face during diagnosis, treatment, and beyond as well as 2) ways individuals and families can manage some of these challenges.

*This session is open to adults with FA, primary caregivers and parents of children/adults with FA.


Naomi Joffe, PhD, Assistant Professor, UC Department of Pediatrics; Cincinnati Children’s

I am a pediatric psychologist who specializes in working with patients diagnosed with hematological disorders, immunologic disorders and cancers, including those who will undergo stem cell transplant. I work with children and adolescents in the Cancer and Blood Diseases Institute (CBDI) at Cincinnati Children’s, helping them cope with the demands of having a chronic illness. I also help them follow their medical team’s recommendations and teach strategies to cope with pain.

I’ve always enjoyed working with children and young adults, and I had an early interest in the medical field. After engaging with youth with chronic conditions through early volunteer opportunities, I knew I wanted to continue to support these individuals through their medical journey. As a pediatric psychologist within CBDI, I feel honored to be part of the team caring for patients and families during this challenging time.

In my practice, I understand that what is “normal” for our patients is the difficulty of having and managing a chronic condition. Our psychology providers work to use each patient and family’s strengths to support as much typical development and healthy adjustment as possible in the face of these stressors. Our CBDI psychologists are here to serve as a resource for our patients and families, their caregivers and siblings. We can also connect them to providers in their own communities when appropriate.

In addition to helping patients, I have the opportunity to collaborate with both my psychology colleagues and medical colleagues on research. I have participated in projects working to improve the transition from pediatric to adult care among young adults with sickle cell disease. I also collaborate in quality improvement projects within medical teams, studies with the goal of improving patient self-management and disease outcomes, as well as projects committed to developing measures that better capture the experience of a specific medical population.

In my free time, I love learning how to do new things. This may be something in the garden, a new activity with friends or cooking something fun with my family.