Recap of 5th TSF Conference

It was exciting to see the objectives of the Thalassemia Support Foundation being realized in a very tangible way during the recent conference at Children’s Hospital Los Angeles.  The evolving theme throughout the conference was how to better manage your health and family life, i.e. improve quality of life while living with thalassemia.

Doctor Thomas Coates was excellent in his explanation of thalassemia and the importance of complying with the individual’s medical requirements.  He acknowledged the difficulty in complying, yet noted that when the patient complies with medical care, life expectancy is projected to be long and productive, versus a median age of fifteen, which was the case in 1970.

An individual’s story is a profound way to give back to the community.  The panel, consisting of patients and a parent, told their stories of struggles, despair, challenges, and triumphs.  In each life story, it was clear that having thalassemia added another very significant layer of complication on ones life.  Yet through the help of community and knowledgeable medical professionals, each panel member talked about becoming stronger in their uniqueness and excelling in life.

Community gives strength and shared knowledge. The separate groups of patients and spouses, and parents and family provided excellent opportunities to share experiences in a very real and helpful way.  It cannot be said better than Lance Sevier, a father, said in his note to the board.

“The opportunity to talk with, and ask questions of, other parents was wonderful. I think I learned the most from the real life experiences of patients and families … shared with such honesty, openness, and tears. Our 4 year old daughter, Hannah, has a long and productive life ahead of her and we are better able to support her because of all we have learned.”

 Thanks to all who participated and attended.  It was great to have representation from the Sickle Cell community and from California Public Health.

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