Local teen overcomes debilitating disorder to finish high school at top of her class

BY CRISTINA TRAPANI-SCOTT

CLINTON — Imagine being a high school freshman. Those early days can be tough, navigating new hallways, new schedules and being the underclassman. Now, imagine that along with all the pressure of starting high school your body turns on you, swells and turns red or purple, so that all you can do is wear sweatpants and flip flops to school. A few kids around you do what kids will do when confronting difference. They tease you. On top of all of that the mere act of being in a crowded lunchroom is more than just emotionally painful. It’s physically painful.

For Clinton High School senior and valedictorian, Anabel Gilbert, the picture is all too real. At the start of her freshman year she was diagnosed with Reflex Sympathetic Dystrophy (RSD), a rare disorder that causes intense pain that is out of proportion to the severity of an injury. Little is known of the disorder and what causes its sudden onset, but unlike regular injuries the pain tends to worsen over time instead of get better.

Gilbert was 14 years old and at marching band practice when symptoms first surfaced. She put on her shoes and felt something in her foot pop. She said she didn’t think anything of it and made her usual trek home on foot. The pain worsened and she went to the emergency room that night. The doctor told her nothing was wrong, but by the next day her entire foot had turned purple. She said what followed was a series of trips to different doctors and specialists as her symptoms worsened. Finally, after nine weeks, a doctor at the University of Michigan Health System diagnosed her with RSD.

“I used to run six miles a night, and I asked the doctor when I would be able to run again. He said, ‘You’ll be lucky to be walking in a year,’” said Gilbert.

Early struggles with RSD
She was told that the disorder was rare and that there was no cure. She, however, wasn’t going to settle on losing her ability to walk at age fifteen. She turned to the Internet in search of more information on the disorder. “I still had dreams and hopes, but I found that most people who get this are in their 40s. Some were suggesting taking early retirement. I said, ‘But, I’m in high school,’” she said.

Gilbert did general Google searches hoping to find more people her age and found three other young women her age—one in California, one in Florida and one in New York. “The four of us started talking,” she said. “We said we should do something.”

What the four young RSD sufferers did was go where other young RSD sufferers might find them. They went to Myspace and started the Fight RSD page where they’ve invited those living with RSD and their friends and family to seek and offer support. Gilbert said that now the page has more than 1,000 friends supporting the cause.

In remission now, her road getting there has been long and fraught with huge hurdles that would seem daunting to anyone, let alone a teenager. She’s lived with pain so intense that she couldn’t even let her mother hug her, which for her added emotional pain since the two are extremely close. She said mornings were her best part of the day and by evenings the pain had grown so intense that often her mother had to write out her homework for her. She couldn’t do the things she’d normally done most of her life such as wrestle with her brother or even sit down. Gilbert said her breaking point was when she couldn’t even sit down with her family on Christmas and play cards because the pain was so intense. Her schoolwork suffered because she missed so much school. At one point, she was taking 70 pills a day to help with the intense pain. “The best description that I’ve heard from anyone is that you fill your veins with kerosene and light it on fire. I don’t remember where that came from, but that is the most accurate description,” she said.
Things changed for Gilbert when she decided to stop taking the medications after seeing a commercial that showed that people had been dying from one of the drugs she was taking. She said all of the pills weren’t working anyway. In addition to stopping medication, she spent two weeks in an intensive physical therapy program at Cleveland Clinic where she worked for eight hours a day to overcome the symptoms of RSD. “It was intense and really hard. They make you do the things your body is saying it can’t do, but they had me running again,” said Gilbert.

Life in remission
The senior, who is planning to attend Ohio Northern University to study forensic biology, has been in remission for two years. For her, that means she’s reached a point where the pain that she does feel is tolerable, and she’s able to maintain a relatively normal quality of life.

Gilbert has learned to adjust the way she lives so that she can deal with her symptom flare-ups. She’s made hundreds of trips to doctor offices and said that she’s had 300 X-rays taken throughout the past four years. She now also deals with other side effects such as scoliosis, because she’s had to walk differently to avoid pain. Still, she doesn’t let anything hold her back from doing what she loves to do and being like any other teenager. Because it was the act of putting on a shoe that caused so much pain, it took a long time for Gilbert to be confident in wearing shoes again. She, however, overcame her fear in her own way by buying many pairs of shoes. She also discovered that music can trigger episodes, but she has continued to participate in all of Clinton’s band programs. “I’ve been told to quit band a good 60 times. I figured I had two options. Go home and quit band and go into complete remission or stay in band. It will hurt, but I’m doing what I loved. Band has been great. Band is what saved me when I was going through the worst of this,” she said.

In addition to keeping up her activities, she rallied her grades back to finish at the top of her class. She said she’s learned to accept that RSD is part of who she is and embrace what it has given her. “In some ways,” said Gilbert, “I consider it a blessing in disguise. I’m a much better person for it. I’ve been able to take this and use it to help others.”
She has helped others. She’s not only created the Fight RSD Myspace page, but Gilbert has held fundraisers, selling buttons at school to raise money that she’s donated to the organization RSD Hope, which funds research on treatments for the disorder. She’s even been recognized by RSD Hope as an RSD Angel for creating a support network for the RSD teen community. “They [RSD Hope] are great. They really embraced the fact that I was reaching out to the teen audience,” Gilbert said.

Now that she is in remission, she said she has one rule. She insists her friends and family don’t ask her how she’s doing. She said she just wants to be treated like a normal teenager.

“It’s been a long road,” said Gilbert. “I’m very thankful to be where I’m at today. I shouldn’t be graduating or walking even, but I’m here and I’m honored to be a valedictorian.”

To learn more about RSD visit Gilbert’s Fight RSD Myspace site at www.myspace.com/fightrsd or visit the RSD Hope website at www.rsdhope.org.