Advocates on Steps of Congress 2013
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Lauren Beeson

Scleroderma is a big word for a six-year-old. For Lauren Beeson, now 26, stepping into the scleroderma spotlight at such a young age seemed like the right move.

Scleroderma is a big word for a six-year-old. For Lauren Beeson, now 26, stepping into the scleroderma spotlight at such a young age seemed like the right move.

“I never thought, Why me?” Lauren recalls. “I listened a lot and was very observant. I was very aware of what was being said about my diagnosis.”

Growing up in Pembroke Pines, Florida, Lauren was the first child officially recognized with scleroderma in her area. Just like many other patients, her disease was not diagnosed quickly.

“I had so many different symptoms,” shared Lauren.  “It started with morphea on my torso and some skin discoloration. After bouncing around from doctor to doctor and missing a lot of school, we finally found a pediatric rheumatologist.  Not until a vein starting attacking my forehead did they diagnose me with linear scleroderma.”

Lauren’s mother, Marsi, found a support group in southeast Florida and went alone because she didn’t know what to expect.

“She went to the first meeting by herself because she didn’t want me to be scared,” recalled Lauren. “My mother has always been my biggest supporter. She was a single mom, and we were always busy with doctors’ appointments. I never felt like a burden or that it was my fault. She never let me use the disease as a crutch or an excuse. My mom has been such a staple in my life. I still call her every day, which is a little shocking to her.”

Lauren quickly embraced the support group and felt comfortable at the weekly meetings.

“It was basically me and a bunch of older people in their 60s and 70s. I enjoyed seeing everyone. There was so much love in that room, and I felt taken care of,” Lauren remembers. “A lot of the time I felt, Why them? They were hurting more than me. It was hard watching them suffer. The most difficult part was showing up to meetings after someone passed away.”

After engaging with her southeast Florida community, Lauren decided to get involved on a bigger scale. She was highlighted on a poster for the Scleroderma Foundation.  She traveled around the country speaking on talk shows, went to Capitol Hill to ask for research funding, and attended countless conferences as a face of the Foundation.

Lauren headshot.jpgAs a teenager, Lauren was the Foundation's first teen ambassador. She participated in workshops and seminars at the conference for kids and teens experiencing what she had gone through, growing up with a rare, incurable disease. She was also awarded the Points of Light Award (for exemplary volunteerism) by former Florida Governor Charlie Crist.

“They made the announcement over the PA system at my high school. Everyone knew who I was,” said Lauren. “It wasn’t always easy, though. Kids made fun of me, but I would get more annoyed than hurt. I would usually respond by informing them about scleroderma. It was kind of like a teaching moment. I specifically remember talking to people about scleroderma as early as the second grade.”

It was at Charles W. Flanagan High School that Lauren met her husband, Kyle Jones.

“I barely knew him. He gave me a ride home one day after I missed my bus. We were always nice to each other. I went off to Texas for college, and at the end of sophomore year, he started texting and messaging me, trying to set something up. I tried to scare him off, but that clearly backfired.”

Lauren and Kyle were married on March 11, 2012, at the Addison in Boca Raton, Florida.

“Kyle is a great man. He is truly one of the most unselfish people I know. We can talk about anything. We really wanted a Texas wedding but got a Florida one instead. It was beautiful. Oh God was it beautiful! Everyone still talks about how it was one of the best weddings ever.”

Lauren is embracing her new role as wife with open arms. Living in Texas, Lauren remains active in her community. She is a member of the All Saints Lutheran Church in Arlington, where Kyle serves as youth director. Lauren is also studying kinesiology at University of North Texas in Denton.

“My hope is to get my doctorate in physical therapy. Originally I wanted nothing to do with the medical field because of my disease. I grew up in doctors’ offices. But I was a nanny for a little girl who had PT twice a week and watched her get better. This particular clinic saw all kinds of different patients. I thought it was awesome and could totally see myself doing something like that. I’ve always loved children and love working with them.”

In addition to working with children, Lauren hopes one day to become a mom.

“I definitely want to have a baby of my own. I’m trying to figure out the whole scleroderma and pregnancy thing. Kyle and I are actually in the process of becoming foster parents. I’m scared out of my mind but I still want to do it. We know that it will be the hardest thing we will ever have to do. There is a really big need for it, and we are both willing to do it.”

Her infectious, positive attitude about love and life is something that all patients battling scleroderma, or any rare disease, can look to for inspiration.

“It’s going to be hard. Everyone has their own struggles, but we just need to find adaptations. You just need to figure out what works best for you. You can’t let other people affect the way you want to live. No one is normal. Normal is just a made-up word.”

 

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