When people look at me, they see a normal, healthy 21-year-old young woman. But what they don’t realize is they’re missing a big part of my life. At one point in my teens, the words “normal” and “healthy” were never considered when people looked at me. In order for that to change, I needed The Children’s Hospital of Philadelphia. Unfortunately, the road to get there was complicated.
Five years ago, I was focused on my two passions: writing and tennis. At one tennis practice, my life changed forever. A pain in my dominant left hand intensified from throbbing to burning. One wrong hit and my thumb popped, causing bone-crushing pain.
A week later, my hand looked like a swollen purple balloon and felt like a car had run over it while it was inside a burning fire. My orthopedic doctor didn’t know what was happening and unconfidently diagnosed me with reflex sympathetic dystrophy (RSD), which also is called amplified musculoskeletal pain syndrome (AMPS). It is a neurovascular condition that results from an injury to your nervous system. Pain from an original injury gets sidetracked into an abnormal neurovascular nerve feedback loop that causes a cycle of intense pain. AMPS pain is often much worse than pain from the original injury.
The next two years became a blur of doctors and procedures. Despite various treatments, I was referred to more than 20 doctors who told me the same thing: my AMPS symptoms were abnormal and something else medically had to be wrong.
While my friends were having Sweet 16 parties, I was in a hospital having an unsuccessful nerve block. When I was supposed to be preparing for SATs, I was having spinal correction and fusion surgery.
While everyone worried about prom, I had to look for a dress that covered my 13-inch scar while debating whether to wear heels because the AMPS had spread to my left foot.
To make things more unsettling, most doctors never let me make choices about treatments — that was until my internist told me about Dr. David Sherry, who leads CHOP’s Amplified Musculoskeletal Pain Syndrome Program.
Then something amazing happened. Dr. Sherry confidently gave me a diagnosis: I only had AMPS, and my body’s response was different from most. What made him unique was that he treated me like a young adult, a rarity in my experience.
Everything seemed to be in order for my recovery, but there was a hurdle to cross. Dr. Sherry wanted me to go into his highly successful inpatient AMPS program at Children’s Hospital, and the open slot was in the middle of my senior year of high school. After a long deliberation, my family and I decided against the inpatient program because in the bigger picture of my life, interrupting my education wasn’t feasible.
Dr. Sherry understood, and we collaborated to create an intensive outpatient physical therapy program that was designed like CHOP’s. I was included in coordinating a treatment plan that didn’t compromise my recovery while being home for my senior year. I added another piece to my recovery: acupuncture. The AMPS team supported this untraditional element too.
CHOP wasn’t just my saving grace; it still plays a huge part in my life. Even though, at 21, I’ve moved on to adult care providers, I’m still in touch with Dr. Sherry. He told me I have a “lifetime membership” to his services. His long-term interest in me is reflected in CHOP’s staff — they never treat patients as temporary, but as part of the family.
Now that I’m finishing college, AMPS plays a tiny role in my health because I have only minimal residual pain. CHOP’s ability to heal me gave me the opportunity to write a young adult memoir, This Too Shall Pass, about the craziness that surrounded my teenage life. I’m working to get it published so my experience can help others who face overwhelming situations.
I started working at CHOP as a Youth Partner with the Family Partners Program, too, giving speeches at New Employee Orientations and using my story to advocate specifically for teenage patients so their experiences with Children’s Hospital are as positive as possible. And I’m excited to be the young adult voice on a research team studying sleep this fall, pending grant approval.
CHOP gave me my health and life back, proof that no obstacle is too big with the right partner helping you through.
Learn more about CHOP’s AMPS Program at www.chop.edu/amps.