The Children’s Tumor Foundation’s Clinical Care Advisory Board (CCAB) was established to improve the clinical care of patients with all forms of neurofibromatosis. Comprised of a group of dedicated NF clinicians from across the country, the CCAB invited three patient advocates to join the board and attend a team retreat in Atlanta, providing perspective and opinions that only a patient can share. We asked one of these patients, Reema Bogin, an adult living with NF2, to share her thoughts on joining the CCAB.
CTF: Why did you agree to join the CCAB as a Patient Representative?
Reema: When you are diagnosed with NF, it is not only a harrowing medical journey but a challenging emotional one as well. For a long time, I was uncomfortable talking about my experiences with neurofibromatosis type 2. The emotional journey one goes through with NF, and NF2 in particular–as one of the hallmark effects of the disease is hearing loss and deafness–is akin to the five stages of grief: 1) denial; 2) anger; 3) bargaining; 4) depression; and 5) acceptance. It was only when I reached stage 5, acceptance, that I really became comfortable discussing my experiences with NF2. Beyond acceptance, another essential ingredient to this journey is gratitude, which is expressed through a desire to give back and contribute to advocacy efforts towards research and a cure.
When I was asked to be a Patient Representative on the CCAB, I saw this as an opportunity to express my gratitude in this journey through advocacy on behalf of my fellow NF2 heroes, and to share our thoughts, concerns, and issues regarding the best way to advance patient care and access to clinical resources throughout the NF2 community. I see this experience with the CCAB as a first step towards a greater advocacy role.
What were your expectations going into the Atlanta meeting?
To be completely honest, I did not have any particular expectations because this is the first time that the CCAB has patient representatives. It was a bit daunting to be surrounded by a group of leading NF experts, but they were all very welcoming and eager to hear from the patient representatives, often seeking our opinion or learning about our experiences on matters involving clinical care. If anything, one goal of mine in attending the Atlanta meeting was to have a more defined idea of what our roles as patient representatives would be.
What did you learn? What were your impressions?
It was fascinating to learn more about the clinical paradigms and models that doctors are interested in testing out for improving clinical care and access to clinical care. This really solidified my faith in the doctors and medical experts involved in CTF’s various initiatives and projects.
Another lesson learned was about the challenges that others with NF face in different parts of the country where they might not have access to experienced clinicians. It was also interesting to learn more about the experiences of patients with NF1 and schwannomatosis.
How does this role (that of a Patient Representative on the CCAB) impact or influence your own care and your perspective living with NF?
It has certainly ignited a desire to get more involved in advocacy efforts for NF, and NF2 in particular. My journey with NF2 has ingrained the importance of gratitude in all facets of life. I know that there are many cases worse than mine and yet, there are also more mild cases, but the important thing is to be grateful for where I am in my own journey and how I have persevered in spite of the challenges posed by NF2. I also know I am lucky because of the strong base of support from my family and husband that has allowed me to thrive and continue my education in spite of being diagnosed with NF2 as a sophomore in college. My goal is to use the lessons learned on this journey and give back to the strong community of advocates that we are lucky to have.
Three patient representatives attended the CCAB meeting; from left,
Michele Holbrook (schwannomatosis), Reema Bogin (NF2), and Alwyn Dias (NF1)
Click here to read more about the Clinical Care Advisory Board meeting in Atlanta.
