Patient Perspective: “A Sense of Community” from Patient~Family Conference

May 14, 2013 – This year’s CAF Patient~Family Conference is June 28-30 in Philadelphia. (Click here for details.) What’s the Conference like? We asked Trinayani Christiansen, who attended last year’s Conference, a few questions about her experience.



CAF: How many Patient-Family Conferences have you attended?

Trinayani: Last summer (2012) was my first Conference. I was 24 years old.

Why do you think these Conferences are valuable?

I think that the Conference is extremely valuable because it creates a support system for you. I can’t tell you how exciting it was to be in a room with people who knew what I was talking about without having to explain what thalassemia is. I have never had that experience before this past summer. I live in a place where I have only met one other person with thalassemia, and her compliancy level was nowhere near mine. Her parents also did not seem to have the same views as my parents when it came to our care, so it wasn’t like my parents had anyone else to turn to as well. I can’t wait to bring my parents to a Conference so that they can talk to parents going through this. I just wish we would have know about these Conferences when I was younger; it would have been so nice for my parents to have known other parents.

What did you “take away with you” from the Conference?

TrinayaniQuoteThe thing that I took away from the Conference was the sense of community. It was so nice to finally see that I was not alone in my battle and that there are people who understand. I really liked all the information presented at the Conference, but I also gained a lot of powerful and meaningful relationships from that weekend. I took away courage, support, love, and I was empowered to keep continuing on in my journey to live like a “normal” person.

If you were talking to someone in the thalassemia community who was interested in attending the Conference but not quite sure, what would you tell that person that might encourage him/her to go?

ConferenceAgendaI would tell them what I said in response to the last question. Also, if they were parents of young kids, or someone who wanted to learn more, I would tell them that the topics and information presented are also a big help. It’s so nice to see the doctors’ presentations and see that they have put their hearts into making this information accessible and understandable to us as patients. It offers us a sense, as patients, of control and knowledge, and it arms us with tools and options and may present new things to us as well.

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