|Written by Mary J. Tunison|
|December 6, 2006|
Michele DiPietro and her dad, Michael(Photo courtesy of the DiPietro Family)FARMINGTON – When the DiPietro family needed some heavy-duty support, members of their church community, St. Patrick Parish in Farmington, rose to the occasion.Within two short months, the parish has raised $85,149 for one of its young members, Michele DiPietro, who has been diagnosed with a rare and devastating disease known as reflex sympathetic dystrophy or RSD.Michele’s battle began when she was 11, after injuring an ankle while playing soccer. Time passed but the pain grew worse. The slightest touch to her foot triggered intense, burning pain, and it began to spread.The accident occurred in March 2002. By May, Michele was undergoing a series of tests from bone scans to M.R.I.’s. The results were inconclusive.Michele and her parents went from one hospital to another in search of answers. Michele underwent scores of treatments, from traditional medications and physical therapy to alternative medicine, and spent countless hours in emergency rooms because of the progression of RSD and complications from the medications. Over the past five years, Michele has used crutches or a wheelchair when the pain was most severe.RSD, also known as complex regional pain syndrome (CRPS), is a chronic, highly painful and progressive neurological condition that affects skin, muscles, joints and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain.The symptoms include intense pain that is out of proportion to the severity of the injury. The disease is characterized by various degrees of burning pain, swelling, discoloration of the skin and sensitivity to touch. Because there currently is no cure for RSD, the goals of treatment include controlling and minimizing pain and preventing progression of the disease.When Father Mark Flynn, Pastor of St. Patrick’s, first heard of the DePietro family’s plight, he sprang into action, getting the word out to his parishioners through word of mouth, bulletins and articles.“The response was overwhelming,” said Father Flynn. “All of the parishioners have been so very generous. In addition, four families have donated huge amounts of money, which has been an enormous help.”Father Flynn explained that the money will help defray some medical expenses that have accrued over the years. “This has been the greatest blessing for them,” explained Father Flynn.Because many of the treatments for RSD are experimental and not FDA-approved, insurance coverage has been denied for most of them. The family has spent thousands of dollars on treatment, travel and other medical-related expenses.
It has been a nightmare for the family. It was hard enough for Mr. and Mrs. DiPietro to know their daughter was suffering. It was worse encountering baffled physicians who really didn’t know what they were up against. And it was compounded by the assumptions of those, including doctors, who thought it might just all be in her head.
It wasn’t until a woman from their parish directed them to Dr. Robert J. Schwartzman that they found someone who really understood their plight.
Dr. Schwartzman, a professor and chairman of neurology at the MCP Hahnemann School of Medicine in Philadelphia, is a specialist and pioneer in RSD research who has researched RSD/CRPS for more than 30 years. He has treated more than 4,000 people with RSD.
He usually does not treat children, Mrs. DiPietro said. Besides, appointments with him are made years in advance.
However, something intervened in Michele’s case.
“I was given an appointment three years out,” explained Mrs. DiPietro. “I called back on Monday, and spoke to the correct person and she gave me an appointment for the next week, November seventh, the day my father died. I knew that it was a message from my dad and God that I had to go to this appointment.”
Dr. Schwartzman diagnosed Michele as having a severe case of RSD.
Most of Dr. Schwartzman’s work with RSD patients takes place in Germany. The best he could offer her in the United States was a series of treatments involving the drug ketamine, which costs about $800 per day. The treatments have not helped.
Now, the family is trying to raise enough money to fly Michele to Germany for a procedure that has proven results in relieving pain. The treatments, which Dr. Schwartzman performs in Germany, cost between $40,000 and $50,000.
The trial treatments employ high doses of ketamine, an anesthetic, to block abnormal pain receptors. The procedure is considered successful, even though it is extreme and dangerous.
Between sighs and tears, Karen DiPietro admitted, “It is so hard to see Michele suffering this way. I would do anything and everything if there was even the slightest possibility of relieving her pain.”
Although this experience has nearly torn her apart emotionally, Mrs. DiPietro said it is her faith that keeps her going.
“What doesn’t destroy you will make you stronger,” she said, “and I’m trying very hard to be strong for Michele. I know it’s all in God’s hands.” She went on to say that she believes God is using Michele’s suffering for good and that it has brought about a sense of unity and perspective in their church.
Prior to her injury, Michele enjoyed soccer, water skiing, playing in a band, dancing, field hockey and hanging out with her friends. She has not attended school in months but she does take online courses to keep up. She spends many days in bed, immobilized by pain.
“Our biggest hope is that it will all work out and she [Michele] can live a normal life again.”
Michele is not giving up. She tries to focus outwardly instead of inwardly. During her hospital stays, she’s made time to visit the neonatal care units and helped to cradle at-risk babies born to drug addicted mothers.
Although Michele struggles with some harsh realities right now, she dreams of a day when she might live a normal life.
She hopes one day to become a physical therapist.