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Story of an Alpha Thalassemia Baby

Living with Thalassemia

Living with Thalassemia:
Student Projects:
"Blood Transfusions - the Lifeline for Thalassemia Patients", by Natalie Maino
Patient Stories:
▶ Thuy Carpenter
▶ Chandan Das
▶ Paul DiLorenzo
▶ Meghan Foe
▶ Jane Huynh
▶ Rammeet Kaur
▶ Kim
▶ Perry Lai
▶ Imsub Monmeesin
▶ Braulio Navarro
▶ Huythong Nguyen
▶ Olivia Stahl
▶ Siddhant Talwar (2009)
▶ Siddhant Talwar (2015)
▶ Abby Torkelson
▶ Susan Winner
▶ Karim Zamani
▶ Serafina Sammarco: Isabella's Journey

Patient Stories

My Journey with Thalassemia
by Siddhant Talwar (09/13/2009)

As fifteen year-old, thalassemia has affected my life in many aspects. I was diagnosed with this disorder at the age one and thalassemia has been a part of my life ever since. Although there are many disadvantages related to this blood disorder; it has taught me and shaped me into the person I am today.

Thalassemia is a life-altering disorder as its complications distract from normal lifestyle. This disorder has changed my life in many ways. As a young boy in the early ages after my diagnosis, I obviously did not comprehend the situation that I had and accepted it as a normal part of life. Treatment wise and complication wise, I was troubled with all the physical pain of the intravenous treatment and common sicknesses. But over the years and as I grew, I started to understand and became curious to find out the terms of my situation.

At the age of 5 yrs, I had a huge impact of my life. At this age we made the big decision to move from India to America, mainly for the reason of a better medical treatment. This move disturbed many aspects of life for me and my whole family, making a transition from India to America was challenging because we had to adjust and familiarize everything especially the lifestyle. After getting used to the environment it was a little easier. The age of 10-12 was a harsh one because I was still trying to fit in and in doing that I made some mistakes. In school I was still not treated fairly as other kids use to tease me & bully me either because of my situation or my height. So I used to get frustrated many times but my parents always supported me & encouraged me to always look at the positive side of the life.

The ages 12-13 were a new chapter as I was moving into another part of my life. I was faced by many decisions that a normal teen faces. I was shortest in the class but this never discouraged my feelings & I always maintained positive attitude. Personally this age was not too hard for me knowing my principles and my family values it was fairly easy to move along this age.

As a teen living with thalassemia is not necessarily hard yet it is not easy. Fitting in with peers and expressing your situations can be hard as you don’t know how the other person handles the knowledge. Restrictions are ever present whether in sports or other rigorous contests. Other activities, for example sleepovers are affected because of nightly desferal treatment. Receiving transfusions can be hard because of the timings that transfusions can be received, is not compatible with the school attendance. Other obstacles in life are emotional and physiological pressure and pain. Understanding that you have a unique situation and acknowledging about all of its related issues can be hard to accept.

Last year in 2008, I entered high school which was fun and exciting. Meeting new people and making new friends that could understand my situation was very nice. So that my teachers were aware, my parents organized meetings with my teachers and councilor in the beginning of school, this helped me in school to be successful. On the other hand I was restricted from doing other things with my friends. I am limited on how much physical, and activities that interfere with my situation, I can participate in. Moreover high-school has lot of academic pressure especially with advanced & honors classes that are challenging. Taking out days from school could put you behind among peers & can adversely impact your grades to a great extent. Adding to this is the challenge that the children’s hospital in Phoenix doesn’t run out-patient clinic during week-ends. I have tried to find a work-around by doing small things like using a tape-recorder for the sessions that I miss & carefully coordinating with the school councilor to schedule my classes so I miss the least important sessions. Also I have a few friends that can provide & share with me the lectures that I have missed.

Still I am very fortunate to have such a wonderful treatment and staff of doctors that treat me. Every six months I come to Oakland for a comprehensive clinic where I have my tests done for iron loads in key organs like the heart & liver. Also I meet Dr Vichinsky & Dr Lal who have provided & guided me from several years. From last one year I have joined the clinical trial where I’m on a combination therapy to use 7 days of exjade & 3 days of desferal. This therapy is doing wonders for me & my iron levels have come down significantly (from 2600 mg to 1000 mg within 6 months of treatment). I feel so good of not using desferal 7 days & yet maintaining the iron levels within controlled levels. I want to thank Dr Vichinsky, Dr Lal & the entire Oakland Thalassemia center nurses & staff including Dru Foote, Nancy Sweeters, and Vivian Ng.

Looking at the thousands of people not only with thalassemia, but other disorder who don’t even have a place to go or get medical treatment of any sort, I feel very lucky to be in the situation I am today. Living with thalassemia has taught me many valuable lessons and has bestowed many good qualities in me. I can understand life from another aspect and be appreciative of life and what I have. I want to thank my parents for all their hard work and their support that they have given me throughout my life. At the end, I want to tell all the teenagers & others to be hopeful, optimistic & cheerful in the life. We should use this unique situation as a source of inspiration & motivation to do our best & become a better person in the society & achieve our desired dreams.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3347   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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