"I want the world to understand that even though AMPS is an invisible disease, it is very real. There are more people in the United States that are fighting AMPS than those diagnosed with breast cancer, M.S. and HIV/AIDS. Yet, chronic pain is the world’s most underestimated health problem. I want to put an end to that. I don’t want sufferers to think that they are fighting all on their own."
High school student, Sarah Sheahan, has been a competitive swimmer since she was 9-years-old and is happiest when she's in the water; but when serious pain took over her body, she thought she may not be able to swim again and began a mission to find out what was wrong. She was diagnosed with AMPS, a chronic pain disease, and wants to share her story to help others who may be struggling with nowhere to turn.
Thank you, Sarah, for changing the lives of the those around you!
Every Ella: Tell us about yourself.
Sarah Sheahan: My name is Sarah Sheahan. I am seventeen years old and I am a junior in high school. I was born in Monterey, California and I currently live in Doylestown, Pennsylvania. I have always loved the water, whether it be an ocean or a pool. I have swum competitively since I was nine years old.
You suffered an injury in 9th grade. What happened?
In my 9th grade year of high school, I suffered an injury called costochondritis. This is rib cartilage inflammation. About halfway through an intense swim practice, I felt a sharp pain shoot down my chest after a flip turn. I got out of the pool at the end of my next lap and could barely hold any air in my lungs. About an hour later, I went to the emergency room where I learned that it was a sports induced asthma attack that caused the costochondritis.
Why did you decide to keep swimming despite the pain?
I was told that I could either skip the season or swim through the pain with no further injury. Swimming for my high school was worth more in my mind than the pain that I would endure. This decision to swim ended up saving me in the future from becoming completely debilitated from AMPS.
Your health worsened when the swimming lessons ended. What were you symptoms?
After the season was over, I had an overwhelming amount of symptoms. I started having trouble walking, limping everywhere I went. I also had constant headaches, dizziness, muscle spasms, hearing and vision difficulties, fatigue and allodynia (skin sensitivity).
You were finally diagnosed with AMPS. What is AMPS and how did you feel receiving the news?
Amplified Musculoskeletal Pain Syndrome (AMPS) is the development of an abnormal pain reflex. This overactive pain reflex causes a constriction of blood and oxygen to the muscles, bones, and tissue which creates a lactic acid build up. The pain becomes a vicious, never-ending cycle. Despite the symptoms, I felt relieved to have been diagnosed with AMPS. I was afraid that the doctors would never find what was wrong with me because all of my tests came out normal. I was glad it was a problem that could be treated.
At what age is AMPS typically detected?
AMPS is typically found in the adolescent years of girls. However, adolescent boys can be diagnosed too.
What has intensive therapy at CHOP meant to you?
The intensive therapy I went through at CHOP changed my life. It taught me how to address the things that are hard for me in life, let it be pain, anxiety, or any tough situation. It also made me realize my goals for the future and blessed me with life-long friends.
What do you want the world to know about AMPS?
I want the world to understand that even though AMPS is an invisible disease, it is very real. There are more people in the United States that are fighting AMPS than those diagnosed with breast cancer, M.S., and HIV/AIDS. Yet, chronic pain is the world’s most underestimated health problem. I want to put an end to that. I don’t want sufferers to think that they are fighting all on their own.
You created an information and support page on Instagram called @what_is_amps. Can you tell us about one person in specific that has touched you since starting this account?
Through my Instagram account called @what_is_amps , I received a message from a seventeen year old girl. She shared her story of AMPS with me including that she is from another country where the doctors told her that she was faking her pain. She has suffered for seven years and has not walked in three, wheelchair bound. I had the opportunity to meet her in person at CHOP. Seeing someone so debilitated, yet so smiley and appreciative was absolutely incredible. She is one of the nicest and sweetest people I have ever met in my life. She inspired me and will continue to inspire others with her strength.
What are your dreams for the future?
In the future, I want to become an occupational therapist. The OT’s at CHOP changed my life. They only ever wanted the best for me and did everything they could to make that happen. I want to be an OT because I want to help kids the same way that I was helped.
Name one woman who has inspired you.
One women that has inspired me is my grandmother. She was just about the happiest person on the planet, always positive and wanting to have fun. When I was seven years old, she passed from breast cancer. Through her fight she stayed strong, still only wanting others around her to feel good about themselves. I hope to be just like her.
What do you like to do for fun?
For fun, I love to shop and go out with my friends. I like to be active all the time, which luckily helps to cure AMPS. I also enjoy playing the piano and photography.
What advice would you give girls today?
My advice to girls would be to find something positive in every day because that will make you happy.