NE woman may go into a coma
to enjoy the rest of her life

By Tom Waring
Times Staff Writer

Things were going pretty well for Alessa Abruzzo in early autumn 2003.
The Pennypack teenager was an honor student at Julia R. Masterman High School, boasting a classroom average of 98.
Alessa had many interests. She was a Girl Scout, a lector at Maternity BVM Church, played the violin, participated in school plays, edited the school newspaper and loved to read, draw, garden, sew, cook and take care of her reptile collection.
In October of that year, when she was a high school senior, she developed a food allergy. She took a scratch test at an allergist’s office, and soon after her skin started to burn and turn red. Her overall health deteriorated, and she completed almost her entire senior year while homebound.
Five months later, in March 2004, she was officially diagnosed with Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.
RSD is a progressive disease of the autonomic nervous system that can follow a fall, sprain, break, fracture, sharp injury, infection, surgery or even a stubbed toe. It affects all age groups and is diagnosed many more times in women than in men.
For Alessa, who had been accepted into Temple University’s honors program and planned to live in the dormitories and study English and art, the diagnosis was a jolt.
By April 2005, she could no longer walk and began using a wheelchair.
Earlier this year, during a trip to see Spamalot at the Academy of Music, the car in which Alessa was riding hit a pothole and the action left her legs temporarily paralyzed. She’s been bedridden since March.
Alessa, 20, looks healthy and freely discusses her condition, but she is in pain. Medication helps some but not enough.
Her skin can swell, sweat, change colors and change temperature. She hurts at the slightest touch. She does not sleep well and has difficulty moving. She needs to watch what she eats because she experiences acid reflux.
"There’s nothing you can do to make the pain go away, unfortunately," she said. "There is no such thing as comfort."
In 1998, when Alessa was 11, she fell and hurt her right arm. Looking back, she believes that was the beginning of her RSD, though she was never diagnosed.
Alessa, the daughter of Steve and Terry Abruzzo, lived a normal life until she was diagnosed with the disorder by Dr. Robert Schwartzman, chief of neurology at Drexel University College of Medicine.
Schwartzman has been treating RSD patients for 30 years. There is no cure for the chronic pain.
While Alessa generally does not experience the lesions, discoloration or swelling of some other patients, she is among the 8 percent of sufferers whose RSD is in an advanced stage, meaning the pain is throughout the body.
For those patients, Schwartzman recommends a radical, yet necessary, medical procedure performed at a German hospital. Sufferers are given a high quantity of the drug ketamine and go into a coma for five days. The procedure is not allowed in the United States.
Alessa, who was adopted from South Korea as an infant and later attended Robert B. Pollock School and Austin Meehan Middle School, is one of those candidates and is waiting for the call to make the overseas trip.
"I’m nervous about it, but I don’t have any other option," she said.
The procedure has been likened to rebooting a computer. The individual’s system is shut down for five days and turned back on.
So far, the results have been promising.
Thirteen of Schwartzman’s 33 patients have been cured. The others have experienced some relief.
"Everyone had pain reduction," Terry Abruzzo said.
Mrs. Abruzzo, of course, is hoping that her daughter is one of the fortunate ones who are cured.
"I’d love for her to go over there and wake up without pain," she said. "We’re being optimistic."
The decision is easy for Alessa, whose dream is to regain a normal life.
"Most twenty-year-olds are in college and going to parties," she said.
Alessa stays in a hospital bed set up in the basement of her home. She has trouble laying on her side or stomach, but she can sit up with little problem. She does not leave the house often, usually only to go to the doctor. Her parents lift her in and out of the bed.
The young woman drinks a lot of water to stay hydrated and does not have a big appetite, but she peps up when she hears the Mister Softee truck on her block.
She watches some television, talks on the telephone, plays computer games, holds her pet reptiles and welcomes her toy poodle, Breezy, to lie in her bed. She has trouble relaxing, doesn’t have the concentration to read at length and sleeps only a few hours at a time.
"I try to keep my mind occupied," she said.
Alessa and her parents have tried to stay positive through the ordeal. When she was in the hospital in March, Alessa asked doctors, "Can you have me better by August?" knowing that she had a vacation planned in Daytona Beach, Fla., in conjunction with the National Reptile Breeders Expo.
Alessa would gladly give up the vacation if it meant she was headed to Germany for the potentially life-changing procedure. On the way to and from the European country, Schwartzman has arranged for her to have MRI tests of the brain at Harvard University Medical Center.
The minimum charge for the German hospital stay will be $40,000 and could rise to $200,000, if she requires an air ambulance to make the trip.
The procedure is not covered by insurance, and her family is trying to raise money. There’s a fund-raiser tentatively scheduled for mid-September at Maternity BVM, but if the procedure can be done sooner, the Abruzzos will take a loan.
Saying that, "Anything is better than nothing," Alessa would accept an outcome that would lessen her pain and make her more functional.
The ultimate goal, though, is for a long, but full, recovery.
"I’ve been waiting three years for help," she said. "I’d like to lead a regular life." ••
Tom Waring can be reached at 215-354-3034 or twaring@phillynews.com

How to help Alessa . . .

Tax-deductible monetary donations can be sent to Alessa’s Reach for Recovery — RSD Fund, Citizens Bank, 2516 Welsh Road 19B-0248, Philadelphia, PA 19152.
Anyone who would like to donate a gift basket, gift certificate or other item to be chanced off at an upcoming fund-raiser, call George Beisel at 215-331-8152 or contact Alessa’s Reach for Recovery — RSD Fund, P.O. Box 63223, Philadelphia, PA 19152.
To learn more about the disorder, visit www.rsds.org or www.rsdhope.org