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Brandy Sachs said she was a daredevil when she was younger, and the years she spent running around and playing resulted in her share of broken bones, sprains and other reminders of an active childhood.
But soon, the now-22-year-old Fairfield graduate will take her biggest risk to date.
Brandy has been wheelchair-bound for several years as the result of a syndrome called Reflex Sympathetic Dystrophy, which, among other symptoms, leaves her in constant burning pain, particularly in her legs.
On Tuesday, Brandy and her parents, Lisa and Gordon Sachs, will fly to Germany so that Brandy can be put in a medically induced coma and receive high doses of ketamine, an experimental treatment that could enable her to walk again.
And for a young girl who once thrived on being physically active, that would be a dream come true.
A 'medical mystery'
Brandy began having painful episodes that would last for weeks or months when she was about 6, and she often had severe chest pains and difficulty breathing.
She missed a lot of school, but the many tests she was given during hospital and doctor visits didn't lead to a diagnosis.
She was a "medical mystery," the doctors said.
Brandy's condition seemed to improve when she was in eighth grade and when she became a freshman at Fairfield Area High School. She joined the cross-country team and chorus, and became a junior firefighter with the Fairfield Fire Co. and EMS.
In 1999, Brandy's brother squeezed her fingers together while the two were having an argument. Her forearm and hand were dark blue by the next day, and the pain was intense. It seemed like her body was having a disproportionate response to a minor injury.
Her doctors sent her to Hershey Medical Center, where the mystery continued until a rheumatologist who happened to be walking by overheard the treating physicians talking about Brandy's condition.
He asked to examine Brandy and upon seeing her arm, he told her it looked like Reflex Sympathetic Dystrophy.
RSD is a chronic pain syndrome and a malfunction of part of the nervous system, according to the Reflex Sympathetic Dystrophy Syndrome Association.
Minor injuries frequently set off RSD symptoms, which include persistent moderate to severe pain that is disproportionate to the injury, swelling, movement disorders or limited range, abnormal skin color and temperature and injuries that worsen over time.
The syndrome affects between 200,000 and 1.2 million Americans, according to the Reflex Sympathetic Dystrophy Syndrome Association, and is more commonly found in females.
Brandy's RSD took a turn for the worse in 2001 when she hit her right ankle on a metal bar of a school-bus seat. Her ankle became swollen, dark purple and cold to the touch over the next few days, and she could not walk on it. After being admitted to Hershey Medical Center, her foot turned inward.
Overcoming obstacles
Brandy missed most of her junior year of high school and half of her senior year.
"It was really hard, not only getting the work done in so much pain, but getting up and going to school," she said.
Despite the absences, Brandy maintained good grades, but she was in and out of hospitals and physical therapy, where she was told by several doctors that there was either nothing wrong with her, or nothing they could do to help her.
After surgery and several adjustments done on her foot, it seemed to return to its normal size and color. She began using a brace and crutches, and made it her goal to walk across the stage at graduation the next year to receive her diploma.
"I guess I was depressed and everything hurt, and I was in that phase where I was really giving up," Brandy said. "But I realized, 'Hey, graduation's a year away.' I wanted to do what everybody else did. It motivated me to work hard and do the therapy in order to walk across the stage."
But she had to alter that goal a little in March of her senior year when she hit her left knee on a desk at home, causing her muscles to lock up and putting her in a wheelchair.
With determination and continued physical therapy, Brandy was able to get out of her wheelchair on graduation day and move across the stage with crutches.
She reached her goal, although not in the way she expected, Brandy said.
In the summer of 2003, Brandy was once again in the hospital, this time for appendicitis. During her surgery, the anesthesiologist used ketamine, an anesthetic that blocks signals to the conscious mind from other parts of the brain.
While Brandy was under the ketamine anesthesia, her knee straightened out and her foot returned to its normal position, but went back to their previous state once the anesthesia wore off.
It was the first time Brandy and her parents realized there may be a way to ease her RSD symptoms, she said.
Hope for relief
After graduating in 2007 from Millersville University with a double major in English and philosophy and a minor in criminology, Brandy began graduate school for social work at the University of Pittsburgh.
"I decided I couldn't really do much with my degrees," Brandy laughed. "I wanted to work with children and always liked working with children."
She also began an outpatient clinical trial in July 2007 with Dr. Robert Schwartzman at Drexel University College of Medicine, using ketamine infusion therapy to try to return her foot and knee to normal. Her foot and knee would straighten out during the treatment, but return to their RSD state once the treatment was completed.
Her doctor recommended she be put on a list for the ketamine coma treatment offered in Saarsbrucken, Germany, a treatment reserved for only the most serious cases of RSD.
The ketamine coma treatment for RSD patients is not approved by the U.S. Food and Drug Administration because of the required high dosages of ketamine, which is administered at up to 50 times the normal dose. Ketamine is already the most potent clinically available inhibitor of the receptors that malfunction and cause magnified pain in RSD patients, and has also been used as a street drug known as "Special K," which produces effects similar to LSD, according to the Reflex Sympathetic Dystrophy Syndrome Association.
The side effects of the treatment include significant weight loss, sleep disruption, anxiety and weakness, all of which can be potentially serious, according to the Association.
Before the end her second semester of graduate school, Brandy's RSD once again halted her studies and she decided to take a medical leave.
"It was so hard," she said of her decision. "I was panicking. I kept beating myself up over it, because I couldn't do the reading, I couldn't do the papers or go to class."
She moved back in with her parents, who are now living in Christiansburg, Va., and awaited the call from her doctors saying that she was next in line for the ketamine coma treatment.
And the call came earlier than expected.
Brandy and her family thought they had until November, but on Sept. 16, doctors called to tell them Brandy would be undergoing treatment on Oct. 6.
"It was shocking," Brandy said. "They told me I got it, and I was like 'What?' So she repeated it. My mouth was hanging open."
Her parents were equally shocked and excited but said they were feeling nervous about seeing their daughter in a coma for five days.
"If everything goes all right, I will get my child back to a normal healthy kid. I'm so thrilled, but then again I'm terrified," Lisa Sachs said. "I'm terrified for flying, I'm terrified to watch my daughter in a coma and not being able to do anything. But for the past however many years, there's been nothing I can do and that's the worst feeling in the world. You can't help your child."
Brandy's father, Gordon, agreed.
"I'm busy doing the planning and organizing, and when everything is done and it's time to settle down, that's when I'll probably fall to pieces," he said.
While nearly all RSD patients who underwent the ketamine coma treatment saw positive changes in their condition, only about half of the patients experience complete remission, and the Sachses are eager to see Brandy's results.
They've created a Web site, www.hopeforbrandy.org, to keep friends and family updated on Brandy as she prepares for the surgery, and, because of the treatment and travel costs, have included a donation page for anyone wishing to contribute to a trust fund for Brandy's medical and travel expenses.
The treatment alone will cost about $27,000, if there are no complications. The treatment is not approved in the U.S., so insurance companies do not cover it.
Since the Sachses will remain in Germany for about a month while Brandy goes from pre-procedures to post-treatment, travel costs are also adding up. The Sachses' goal is to raise $50,000 for the trip and medical expenses. They have raised $13,437 so far.
Brandy said that despite RSD's negative effects on her life, she's learned valuable lessons from the experience.
"Basically, no matter what situation you're put in, you should give it your all and try," she said. "It can be really hard sometimes, but if you want something bad enough, you'll find your way around it."
HOW TO HELP
To donate to the Brandy Nichole Sachs Trust Fund, visit www.hopeforbrandy.org and click on "How to Donate." Money contributed to the trust fund will help cover Brandy Sachs' medical and travel expenses.
28-09-2008, 07:04
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