Get to know some Iron Warriors from around the world. Read their stories. Watch their videos. Be inspired.
Advocate. President of ABRASTA, Brazil. Iron Warrior.
Meet Merula Steagall, a thalassemia patient advocate and President of ABRASTA/ABRALE and enjoy the TED talk she recently presented in Sao Paulo, Brazil. Merula has worked to transform the management of thalassemia and blood cancers in Brazil.
Her message that we are meant to live and intensely enjoy each day inspires us, along with her certainty that courage is in our blood. Merula is also the author of a memoir, Coragem está no sangue (Courage is in the Blood), available through the Abrasta website at www.abrasta.org.
Watch her TED talk below.
Student. Artist. Iron Warrior.
Meet Julia Tang. A high school student who expresses herself so beautifully through her art. Julia has donated her artwork to raise funds for a thalassemia summer camp.
Learn more about her goals and passion for using art to help others.
Successful Business Owner from Kathmandu, Nepal. Iron Warrior.
Introducing 21 year old Iron Warrior, Avinab who hails from Kathmandu, Nepal.
Watch his story below.
Meet Alicia Somma-Hodgskin. Holistic Health Coach. Yoga Instructor. Iron Warrior.
Alicia, age 32, from the United States wrote a letter to share with Iron Warriors reflecting on what she wish she knew about staying healthy during her busy teenage years.
To My Teenage Self,
This stuff is serious. You have to do your medicine. This machine with this infusion is literally saving your life. I know you think it’s all good and you’ll keep checking the numbers but that’s not how it always works.
You’re young. You haven’t seen a lot of stuff yet. You might think you have seen a lot but you really haven’t. You will lose many, many friends with this disorder and I’m sorry if that scares you but it’s the truth. Adhering to this medication will make ALL the difference, Alicia. Do your pump. Just DO YOUR PUMP.
I’m proud of you that you always have a positive outlook; don’t lose that! Your willingness to be poked and prodded at transfusions and for clinical studies is awesome and you are definitely making a difference in your community with your attitude.
Appreciate every breath you take.
Appreciate the beauty that surrounds you and the beauty that is within you. Celebrate your body for all that it CAN do and be at peace with all its flaws. Thalassemia is a part of you and it is your choice to embrace it or fight it for the rest of your life.
Life is both short and long. Life is too long to suffer. Life is too long to live fighting against this diagnosis and to feel pain in your body. Limit your hospital visits and keep yourself healthy so you can enjoy this beautiful LONG life because when you look back on it? That’s when it will seem too short.
Keep your blood counts up and keep your iron counts down; it’s as simple as that. Eat the foods that make you feel good and move your body so it’s fun. Keep your body healthy and strong and enjoy all of the bliss and sadness of this life and the intensity thalassemia brings to it all.
You are able to live more deeply and more fully because you have thalassemia. This is truly a gift, my friend, as is your medication. Accept all of life’s gifts and keep smiling. I love you.
You’re doing great, and wherever you are is okay.
Alicia and her husband Brian are raising their daughter River Daisy and living a life with acceptness, purpose and beauty.
Real Estate Agent. Journalist. Mother. Author and Illustrator of Kids Books. Iron Warrior.
Maria is a real estate agent in her neighborhood of Tribeca in New York City, where she has been a resident for over 16 years. She is also a freelance journalist specializing in architecture and lifestyle under her trademark DowntownMom™.
She is in the process of speaking with literary agents for the children’s picture book about the urban landscape she wrote and illustrated with her daughter Julia.
In June 2017, the American Journal of Hematology published Maria’s inspirational essay about her thalassemia journey. Read it here.
And the Jordanian magazine Family Flavours profiled Maria in March 2017. Read it here.
Watch her fascinating story below.