Patient Perspective: “Fighting the Same Fight” at Patient~Family Conference

May 31, 2013 – This year’s CAF Patient~Family Conference is June 28-30 in Philadelphia. (Click here for details.) Below, Jospehine Bila talks about her reaction to last year’s Conference, which was the first she attended.

Jo BilaCAF: Why do you think these Patient~Family Conferences are valuable?

Jo: In the past, I was very apprehensive about identifying myself as someone who has thalassemia. I was afraid of putting myself out there and meeting other patients. My former hospital didn’t have any other thal patients, so I had a lot of fear around knowing others with the illness (in other words, I was really afraid of knowing myself).

Upon changing hospitals and meeting other people who were experiencing the same struggles as me, I realized the importance of peer-to-peer networking. There is no doctor, nurse, or social worker who can truly understand and appreciate your experiences as well as a friend who is also fighting the same fight. Hearing other people’s stories helps to normalize the thoughts that might be keeping you up at night.

Quote from Jo BilaThe Conference exposed me to a number of caring individuals in the medical field and also helped me make new friends in the thalassemia community. The doctors and scientists presented a lot of interesting research. The experience was overall very positive.

If you were talking to someone in the thalassemia community and they were interested in attending the Conference but not quite sure, what would you tell them that might encourage them to go?

You should definitely attend at least one CAF conference in your lifetime. Don’t be afraid. You will most likely come away with a new friend (or three).

ConferenceAgendaIs there anything else you’d like to say about the Conference?

I just want to thank the CAF staff for making the experience warm, welcoming and educational.

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