Sophia Hanson rare disease community member.

2015 Portraits of Courage Honoree, Sophia Hanson

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At the age of 15, Sophia Hanson was attending boarding school in Chicago at Lake Forest Academy.  She loved running for the cross-country team, where she would run up to six miles a day and compete on a regular basis, pushing her body to extraordinary limits.

Now at 18 years old, Sophia is preparing for New York University in the fall where she will study liberal arts and pursue a degree in journalism or creative writing, but varsity sports will not be part of her day-to-day life.

Sophia has been diagnosed with Lymphedema Praecox, a rare disease that causes swelling and hardening in her legs.  It is painful and can be debilitating.

At first, Sophia refused to believe that her legs would no longer function as they once had. After talking with her mom, she realized the severity of her condition, and she decided to face it head on.  Sophia diligently follows the treatment routine and says she is in the best shape of her life, recently running 120 miles in 30 days as part of “The Mother Daughter Run for Lymphedema” fundraiser.

Sophia is active in trying to help others with Lymphedema.  She is a charter member of group that seeks to support the passage of The Lymphedema Treatment Act (H.R. 3877), and she recently attended the Lymph Science Advocacy Program in Washington, D.C. to learn about Lymphedema research.

 

While she may not compete athletically at NYU, Sophia is excited for everything else college will bring. Since being diagnosed, she has seen an “outpouring of creativity” in her writing.   She attends slam poetry events and takes strength from knowing that her writing is better than ever.
Sophia is an example of confronting challenges and obstacles, and not letting them define you.  She says, “People can help you on the way to courage, but courage is something that you have to create for yourself.”

NORD is honored to tell Sophia’s story as part of the 2015 Portraits of Courage celebration.