Patient Panel Explores Living with Thalassemia

October 9, 2014 – One of the most praised presentations at this year’s CAF Patient~Family Conference was the patient panel, during which several patients shared their experiences in living with thalassemia. Among this year’s participants were Aaron Cheng, Anish Goel, Chi Pham and Jaimee Versace.

AaronPanel“In my presentation, I emphasized how important it is for thalassemia patients to lead a balanced life,” relates Aaron, who is studying for a career as a physician-scientist. “Having a strong support network of friends and family makes it very possible to lead a life of excellence. I think that there are ways of viewing thalassemia that can lead to a more positive outlook on life. For instance, having thalassemia is an opportunity to become an important member in a new community, to become involved in patient advocacy, and to learn to adapt to challenging situations. On a daily basis, I draw inspiration from thalassemia, and I attribute my interest in medicine and medical research to my experiences with a blood disorder. I hope that my presentation helped people see how thalassemia doesn’t need to be something to be ashamed of; rather, it can be dealt with positively and serve as an inspiration to excel in life.”

JaimeeVFor her presentation, Jaimee said that “Living a good life with thalassemia requires us to develop discipline in our efforts to maintain a good standard of health. Some of our needs remain consistent throughout our life (i.e., transfusions and chelation); others will change and we must rise to meet these changes. I used to see this course as just an extra workload; a burden that ‘normal’ people didn’t have. I was so caught up in measuring how far behind I was compared to my healthy peers that I failed to realize I was cheating myself out of discovering my own life’s purpose. A life with thalassemia comes with many unwanted obstacles, but if we stay hopeful, such obstacles can turn into valuable life experience.”

Jaimee also shared a few things she has learned over the years:

  • What doesn’t work: constant worrying, acting on your emotions, and tuning everyone out.
  • What works: patience, persistence, self-discipline, and gratitude these behaviors aid in helping you to see the big picture to make better decisions in all areas of your life. It’s not about pushing yourself to the limit to prove you can keep up; it’s about not giving up and learning to accept and deal with challenges as they come.
  • Next time you wish away your thalassemia think of all the empty space it would leave in your life. And since life doesn’t allow for empty space, what situation would take its place? What other challenges, obstacles, and responsibilities would fill in the gap? No one is called to lead a problem free life, but rather a life made purposeful through facing whatever circumstance we are given.
  • Chronic illness has its limitations, but it also has its gifts. Our difficulties make us more in tune to the needs and hardships of others. Don’t waste your pain on complaining; use it to discover the gifts you have to offer that will make your life and the lives of others better. Anish

“I was asked to talk about how I felt when telling people that I have thalassemia,” says Anish. “I think that when you are revealing something personal about yourself, it’s natural to be a little nervous. However, when I tell people about my thalassemia, I’m just sharing a fact about my life; if someone has an issue with it, that is more their issue, not mine. I have found, though, that most people tend to be accepting and understanding, and I want to give strength to those who want to share this information about themselves with others. At the same time, this is a very personal decision: each person should decide for himself who he wishes to tell, when, and how.

“One of my other important messages is that there has been a significant shift in the paradigm concerning treatment in recent years. Things are getting better every day, and the outlook has greatly improved since I was a kid. There’s reason to have great optimism and hope, and I think we need to look at every day as a gift and take advantage of what is available to us now.”

ChiPanel“I was honored to be chosen to speak,” Chi says, “and I hope that others found it beneficial. My message was that attitude is everything. Find what drives you or motivates you and use that attitude in a positive way. Everyone has issues, whether they be medical, work, family, childhood, etc. It’s your attitude and how you deal with the issues. Go in with a positive attitude and positive results can occur. If patients continue to have difficulties, they should know resources that they can leverage such as CAF, social workers, thalassemia social networking groups, and peer health coaches program, which I am a part of. ”

“I really enjoyed being a part of the panel,” Aaron adds. “It was especially informative to hear the experiences of others with thalassemia and to learn about the ways thalassemia has been important in their lives. I hope that future CAF conferences continue featuring the patient panel because it is always great to hear how thalassemia affects a patient socially and academically.”

“I have shared some of my experiences of thalassemia with others, but I’ve never stood up and talked openly about it in front of a large group,” Jaimee says. “I didn’t just want to talk about what I have accomplished, but admit the struggles I’ve faced and still face. Sometimes people are more inspired by your struggle then they are by just your success. My goal for the panel was to express that thalassemia can be an asset to our lives and our close relationships. It is important for us as thal patients to remind each other that we all have something to valuable to offer regardless of who we are, where we are from, and what we’re struggling with.”

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