This woman's life was turned upside down by deadly rare disease that causes "Dalmatian Spots"
Imagine living life where you constantly have to hide your body just to protect yourself from being bullied by others? Meet Marissa Dees, 28, who lives this life. Florida girl Marissa was born with a rare condition Congenital Melanocytic Nevus – a condition that causes cancer-prone moles in the body.
This rare disorder tends to affect one percent of infants around the world or nearly one in 500,000 people. The moles were quite visible on Marissa's skin from the time she was born. She recalls that the doctors were quite surprised by the condition. She said, "When I was born doctors had never seen anything like it, they told my parents I wouldn't make it through the night."
In order to stop the condition from spreading to other parts of her body, the doctors knew that Marissa had to have surgery immediately. At just six months old, she started having surgery in order to remove the affected skin. The surgeries led her to replace the affected parts with artificial skin, as well as stretching her own skin with expanders.
Marissa recalls how the treatment was a painful experience for her, both emotionally and physically. She says, "At first, they treated me like a burn victim with the skin removal, I have had 20 of nevus sections cut out." Despite having numerous surgeries, the doctors could not seem to find the right treatment to cure the disease completely.
She said, "They started using expanders, with a balloon type device under my skin, that they filled with saline and then cut out the nevus and stretched the loose skin to cover the wound." But what made the healing process hard was the negative attention that Marissa was getting from people around her. She recalls when she was a kid in school, a number of them would surround her and call her names.
She said, "I used to be ridiculed, people would tell me that I must be "part dog" because I had "Dalmatian spots" all over my skin, which made me hide my skin even more." These remarks broke her confidence to the extent that she started relying on clothes such as turtle neck tops and full sleeves t-shirts to cover her skin. Up until now, Marissa used to face various demons trying to uplift her self-confidence and self-esteem but things changed when a tragedy hit her life.
Some time ago, Marissa lost her dear friend Jennifer from cancer, and she knew that it was a high time she faced the world and broke her silence about the disease. She said, "'It was the wake-up call I needed to embrace who I am and let other people it's ok to have this condition and to show your scars."
Even though Marissa did not get the support she wanted from her family, she did have a few people who were always there for her. Especially her fiance Norman Green and her two beautiful daughters. Till now Marissa has had 30 surgeries and she does not want to have any more.
She lives each and every day in constant pain, but has learned to live with it. She says, "'I have severe nerve damage from surgeons removing the nevus, which gives me daily pain but I've learned to live with it and am thankful to wake up each day."
Marissa has learned to accept her physical differences and is happy in the place she is now. She does not mind the world staring at her or passing comments because she knows she has people who love and support her no matter what. Now Marissa only focuses on helping those who suffer like her. She is currently part of Nevus Outreach and helps empower the people suffering from this disease and supporting their families.
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