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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

TAG Conferences
by Braulio Navarro (2009)

Braulio Navarro
Braulio Navarro
4th grader
Hi, my name is Braulio, I’m ten, and I live in Washington State. This year, I went to California for my sixth TAG conference. At the conference, I met a lot of people with thalassemia. It makes me feel like I am not alone. I liked talking to the doctors. My family goes the conferences so we can learn more about new medicines and treatments.

Three tips that I learned from this trip:

  1. From Dr. Vichinsky: One hamburger = one extra day of chelation.
  2. From Abby Torkelson: At the conference, I asked Abby, “What do you do about your pump when you go through security at airports?” She told me to disconnect from the pump before passing through the security system and then reconnect it when I’ve passed through. This will avoid beeping and pat-downs. Also, I should always carry a doctor’s letter with me.
  3. Chelating is cool…don’t stop now!

I recommend these conferences to everyone because they are fun, you learn many new things, and you meet a lot of nice people. It is cool!

Braulio Navarro
4th grader
Washington State

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
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