Maria

Champions of the Foundation

Meet Maria

Condition: Lamellar Ichthyosis

  • Passionate about serving others
  • Loves the outdoors & being by the water
  • Don’t look past me just because I look different
Personal Bio > 

Every woman wants to look beautiful but imagine what it feels like to have a skin condition that some call “dragon skin,” an appearance that results in patchy, scaly, discolored skin from head to toe that’s one of the first things anyone notices.

That’s the condition Maria was born with–Lamellar Ichthyosis, a rare, genetic and chronic skin disease which causes cracked skin that often appears brown in color and makes it impossible to sweat. Growing up, she never understood why people would stare and make unkind remarks, and said she looked disgusting. She remembers early the sense of shame from feeling different. The cruelty of strangers has left hurt that impacts her to this day as an adult.

As an adult, while trying to find a dress to wear to a formal occasion, the dress shop refused to let her try on a dress, mistakenly assuming her skin condition was contagious. Upon learning of the rejection, Courageous Faces Foundation was able to intervene and provide a gorgeous ensemble for the occasion.

In dealing with the years of emotional wounds, Maria has chosen to focus outwardly and help others struggling with self-image and shame caused by the cruelty and lack of compassion and understanding of others.

She has served as a camp counselor for children with chronic and serious skin diseases knowing that she would not be as aware of others and their feelings had she not known what it is like to feel isolated and alone, herself.

As Maria says, “…it is because of a mutation in gene TGM1 that I know firsthand the importance of compassion, kindness, and fully accepting people and their differences. I know how important it is to listen to people’s stories and struggles, and I am always willing and eager to lend an ear or a shoulder to cry on when I see that someone around me is hurting.”  “Comparison,” she says, “has the potential to blind us from seeing beauty and wonder in the people and world around us.”

Maria says connecting with Courageous Faces Foundation has made her feel more confident & cared about as a part of an emotionally supportive community that has motivated her to advocate for herself and for others. She’s thankful for the amazing experiences that have been provided to her and for the opportunity to connect with the other Faces and be inspired by their zest for life. “The Foundation has changed my life and has challenged me to see my condition as a source of empowerment rather than something of which I should be ashamed,” she writes.

She attended Ohio State University where she was on the Honor Roll & Dean’s List throughout her studies.

Fun things to know about me:

  • I have lived in three different countries on three different continents, Egypt, Germany, and America with my family
  • I love the outdoors, camping and being by the water
  • I am Passionate about serving others

Favorite Verse

“I am Fearfully and Wonderfully Made” (Psalm 139:14)

Why Maria is thankful for Courageous Faces Foundation:

“Since I have become involved with the Courageous Faces Foundation so many positive things have happened.  I feel more confident & cared about. I am now part of an emotionally supportive community that has motivated me to advocate for myself and for others.  I am thankful for the opportunities to connect with the other Faces and be inspired by their zest for life and strength to overcome obstacles. The Foundation has changed my life and has challenged me to see my condition as a source of empowerment rather than something of which I should be ashamed.”

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