Project Scleroderma | Overcoming the Obstacles
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Overcoming the Obstacles

Andrea Matis is a Scleroderma patient from Southern California who has been living with the disease for the past 30 years. Andrea’s diagnosis, like many other Scleroderma patients, began with little knowledge of the disease and with that a great fear of the unknown as well. Andrea says, “ I was simply horrified. I, and no one I knew, knew what this disease was and all the brochures and info we received showed horrible disfiguring and stats on surviving.” Andrea was a professional dancer at the time of her diagnosis; she had recently married her husband Scott and says they were “ready to live a full life together.” Despite her fears, Andrea went to a friends medical library and read everything she could find concerning Scleroderma and then decided to “fight, fight, fight”.

The next 3 years were spent in and out of hospitals for testing and treatments. Andrea explains her initial struggle with accepting the physical and emotional changes that were occurring for her during this time period, “I had huge issues with the face and hand disfiguration, the weakness and constant exhaustion. Soon I was unable to do anything in the kitchen, my hands covered in painful ulcerations. I had to go to therapy to accept the fact that Velcro jeans and sneakers were my fashion statement. It was a struggle to accept what was going on in my body.”

As time passed both Andrea and her husband were slowly able to adjust to their new norm, with Scott taking on all of the cooking and household responsibilities full time. However, the future they had once imagined for themselves now seemed to look entirely different. Having children was something both Andrea and Scott had always dreamed of, yet with Andrea’s limitations and health concerns it soon became clear that having their own child may not be possible. After strict advisement from their doctor to not get pregnant at this point, Andrea and Scott decided to go the route of adoption.

Although Andrea worried that no one would see someone such as herself, with a disability, as a fit choice to adopt a child, she and Scott pressed on until one day the agency called to notify the couple that there was a woman interested in meeting with them. Andrea explains the first day they met Katherine, the woman they would go on to form a beautiful and lasting relationship with, as one of the most memorable and powerful moments in her life. “The day we met Katherine was the most exciting and scary day of my life. Just her deciding to meet us was such a huge event in my life as I had been ill for several years and thought of myself as anyone’s least favorite candidate. We were very apprehensive. I simply could not believe she had chosen to meet us.  I said as much, and she said it was because of everything we went through with my illness that she knew we were strong people and could handle the open adoption that she wanted. She was beautiful and spiritual, kind and open and we felt like long lost friends immediately. She made me feel like everything I had been through in the past few years lead up to this very moment, that we were chosen to have a family with her.”

In January of 1987 Katherine gave birth to Andrea and Scott’s first child, a son named Bruce. When Bruce was 2 years old, Andrea’s doctor gave her permission to try to get pregnant herself.  With the help of fertility treatments Andrea did indeed get pregnant and went on to give birth to their daughter, Blaine, the following year. And 19 months later another baby girl, Brooke, was added to the growing Matis family.  Of raising the three children Andrea says, “As they grew, I got them involved in dozens of activities and I became involved as well, helping teams, drama productions etc. Aside from my hands, which were slightly surgically corrected between Bruce and Blaine, no one thought any different of me as a mom.”

Sadly, nine years after Andrea was diagnosed, her sister in law Gale was coincidentally also diagnosed with Scleroderma. Andrea says,  “ (Gale) suffered immensely for five years from seizures, tissue hardening and dialysis and spent over 200 days each year of her last two years on earth hospitalized. She decided she could not live that life anymore and told her doctors to take her off dialysis when she was 54 years old.” With such a huge personal loss from a disease that was already so close to home, Andrea and Scott were devastated to say the least. “(Gale) had been there for me, had helped with fundraisers and keeping me company at my worst. In less than 5 years she was gone.”

With numerous personal reasons to champion for this cause, Andrea shares her story of diagnosis, adoption struggles and triumphs, and loss as a result of this horrific disease in her book “Serenaid”. This book offers a vivid display of the sometimes surprising and tumultuous path that life can lead us down. Yet it also reminds us that this path is worth taking no matter how difficult it may be, because there are incredible gifts of beauty and love to be found along the way.

Proceeds from Andrea’s book sales go directly towards The Scleroderma Research Foundation and their mission to support the doctors and researchers who are working hard every day to find a cure.

Andrea’s passion for this cause is deeply evident in her words of hope for the future of this disease, “Every day I wish that Scleroderma would be eliminated off the face of the earth. I also wish that in the meantime it would become a household word like Cancer or Parkinson’s as it is just as horrid, but no one knows what it is.  Scleroderma is a horrific disease that takes the lives of people, mainly women, when they are young and in the prime of their life. It has to be stopped!”

To purchase Andrea Matis’ book, “Serenaid” go to http://Www.srfcure.org/get-involved/store

Christy
rachel@missmerkledesign.com
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