Thalassemia: The Passion to Help Others
by Siddhant Talwar (April 2015)
At the time of my diagnosis with thalassemia, I am sure that the fact of it was a hard pill to swallow for my family. Today, after my whole life’s worth of time, that perspective has shifted.
The journey has been an incredible one for me, full of many emotions and ups and downs, but ultimately, it has taught me to feel thankful and fortunate for all that I am blessed to have. My family and I moved from India 14 years back in the hopes of better treatment for me. Having spent the majority of my life in America, I have embraced the lifestyle while making sure that I retained my cultural values and traditions. Over the years, I made great friends in high school and in college (currently in am a junior at the University of Arizona). However, it is the support system I have had for the past 14 years from family, schoolteachers/professors, and most importantly, the nursing and doctoring staff, that have been so inspiring for me. The love and care with which I was treated made every poke from the transfusions and chelation medicines seem so insignificant. The constant mode of encouragement and compassion left me understanding that the same type of committed care I received is one thing that would inspire anyone as it did for me.
I slowly recognized that I wanted to make an impact on people’s lives and became more inclined toward the field of medicine to fulfill my aim. But with time, it grew apparent that there were things that could be and needed to be done before I could help patients directly with their care. Upon moving to America, my family settled down in Phoenix, Arizona, where, at the time, there were basically two or three thalassemia families residing. Today, we have somewhere between 20 and 30 families. This increase has been quite eye opening for everyone in my family and served to motivate us to try to help decrease the spread of thalassemia. In response, we started to attend local community events to raise awareness of thalassemia with the help of Children’s Hospital Oakland, as well as Phoenix Children’s Hospital. Attending these events slowly transitioned into us opening our local nonprofit, Thal Anemia Foundation, based in Phoenix.
The nonprofit holds a conference annually where we invite doctors specializing in the field of thalassemia to share their indispensable knowledge with the families of Phoenix. Our aim is to promote as much knowledge as possible in regard to thalassemia with the intention of reducing the spread of the disorder. Although the nonprofit is in its beginning stages, we hope to grow the organization on a broader level and perhaps even reach patients internationally.
Living with thalassemia has been a humbling experience. Beyond the hardships, it provides a different perspective and perhaps a deeper respect for life. I am very blessed to be in the position that I am in today and strive to help others like myself to reach the same place in life.
*Please feel free to contact Thal Anemia Foundation at firstname.lastname@example.org with any questions, concerns, or suggestions.