Matthew was applying makeup on his mom Joanne Tronconi, that’s all it took for me to be intrigued. What moved me the most about Joanne and Matthew was the level of comfort and love between them. Matthew, as “Clawdeena,” is a rockstar in his own right. Check him out. He has a huge presence on YouTube and Instagram. Joanne is a mom,
wife, grandmother and regular person who presents differently. Joanne now has built her own following as she speaks openly about the syndrome Klippel Trenaunay to raise
awareness and support for others affected by this vascular disorder.
This story speaks to a piece of my objective here. Our outsides don’t define us. Sometimes other people’s discomfort tries to define us. When I reached out to Joanne she quickly responded with a very open hearted “Yes.” I spent the afternoon at her home, we took some pictures and I met the troops. There were her children, grandchildren, animals and bits of chaos. I felt at home.
Of all my images…my favorites are those with her grandchildren who are blind to what makes her appear “different”. It reminds me when my daughter was in preschool. She was speaking of a child named Alexia…I asked her “Which one?” as there were two “Alexia’s” in her class. She said “The one with the braids”… She did not reference the color of her skin.
In Joanne’s Words:
I have not always had this deformity. I was born with a port wine birthmark covering most of my right side. My skin was smooth and I looked like everyone else with a little help from makeup. I had a very normal childhood and teen years. I dated, went to prom and got married. We wanted a family, but that was not happening as I was diagnosed with uterine cancer. I had to have a total hysterectomy so we decided to adopt. I now have six children and 10 grandchildren.
When I was 40, I fell on ice and my body started to swell and no doctor knew what was happening to me. Finally, I had a appointment with a specialist in New York. The minute I walked into his office he said, “Wow, that is the largest form of KT I have ever seen.” It had a name. I was saddened to find out that there was really nothing they could do for me. I now looked different than everyone I knew. People started to stare at me and children were afraid of me. My children asked me to stay home from their school functions because the
children were so cruel. My kids didn’t want to have to deal with this. They loved me and said, “Mommy you can stay home, we know it’s hard for you. “Wherever I went, church, shopping, taking the kids on vacation I had stares and comments. I tried to hide from the public. No matter how hard I tried to fit in or retreat people treated me differently from when I did not have the disfigurement. I wanted to shout, “I am still the same person. ” I wanted people to take a minute to find out who I was as a person and not judge me for what I looked like. My mother always said, “Don’t judge a book by its cover”.
My son Matthew helped me to realize my strength and worth as a person. He videoed me without my makeup and I told my story to the world on YouTube. I now feel empowered and love who I am and the way I now look.