Meet Kathy Ripple-Gilmour and her lovely daughter Taylor. Kathy contacted me through the recommendation of a nurse-friend who was familiar with The Relentless School Nurse blog. Kathy was eager to share an informative article and graphic about an unusual diagnosis that confounded her daughter’s healthcare providers for many years. Ehlers Danlos Syndrome (EDS) is a complex syndrome that is invisible but wreaks havoc on the patient, with seemingly disconnected symptoms that are often deemed psychosomatic.
I was more than happy to post the article and graphic, but I thought it would be most helpful for school nurses to understand her family’s experiences and suggestions for collaborating to care for her daughter and other students with EDS. Kathy has provided a compelling story, from the perspective of a mom working really hard to advocate for her daughter and unravel this medical mystery that went undiagnosed for too long. Here is Kathy’s story in her words:
Pictured above Kathy and Taylor at an EDS Conference
The School Nurse – An Advocate for our Kids
Written by Kathy Ripple-Gilmour
I am writing to share with you our story, our journey to diagnosis, and raise awareness.
My daughter, Taylor, was diagnosed with Ehlers Danlos Syndrome (EDS) at age 13 because of a perceptive foot doctor who told me to take her to a geneticist. Before that, we were told her myriad of symptoms was “psychosomatic” and “growing pains.” This doctor gave us such a gift. My family, including extended family, now understood our pain and why we always felt different. We were lucky. Many do not get diagnosed until late adulthood, if at all.
EDS is an inherited disorder that creates faulty collagen. Collagen is the main protein found in all our connective tissue. Our defective connective tissue affects our joints, skin, blood vessels, organ systems, and so on, causing wide-spread symptoms.
When we start developing symptoms, tests come back as normal. We have really bad days intermixed with good days. This leads friends, family, and doctors to believe it’s all in our head. Many children are accused of avoiding school or having social problems. Not being believed or being dismissed as “it can’t be that bad” leads us to clam up and not share.
One day they may appear in a supportive joint brace. This brace may only last a day or two. This is long enough for the connective tissues, muscles, ligaments, and tendons to calm down that was stretched due to the hypermobility of the joint. This also leads people to not believe a child because they can recover quickly from a hyperextended joint only to have a different joint bothered a few days later.
Medical school teaches aspiring doctors that “when you hear hoof-beats, think horses, not zebras” and look for common causes. However, it doesn’t teach them that Zebras Do Exist. Our pain is not in our head and we will not fit into a common box. It was once thought that EDS is a rare disorder. We have now learned that is it rarely diagnosed, although this is changing due to awareness.
This invisible disease can wreak havoc. As I sit here and write this post, I look fine. I am dressed and ran errands this morning. However, my hip is hurting and I have to keep readjusting in my seat. My neck hurts so much that I had to move to the couch to type this so I can support my head. These are the things I never share with friends. They have no idea. I go to work daily and teach amazing first graders who never know how my body betrays me daily.
But I am an adult. Kids, on the other hand, complain. They share their hurt. And this is where YOU, the school nurse, can help our EDS community. Think about the child that complains often and always seems out of sorts. This child often avoids activities that other children consider fun, but they show anxiousness. I remember the countless phone calls from my daughter’s elementary school nurse. “She’s tired all the time, maybe earlier bedtime?” “She is in my office again, with a headache and sore throat.” “Taylor’s back, she is complaining of a headache and ankle hurting.” “A headache again, can you come and get her?” “Yesterday it was her ankle, now she is complaining of her knee.” “Maybe it’s time to see a therapist.” “What does her pediatrician say?” The worst was from her teachers, “She is missing too much school. Please take her to the doctors.” And I would always explain that no doctor has an answer, they are just as baffled as we are. And please know that this child is in pain. She is not faking it. I am sure at some point they were thinking of calling social services as they could not believe the amount of pain she complained about.
In middle school, she was diagnosed. After diagnosis and an IEP, she was able to go to the nurse to lay down for 20 minutes with an ice pack placed wherever the pain was and ibuprofen. This simple gesture of kindness from her school nurse, with an understanding that she was not trying to avoid class, but trying to stay in school, made a huge difference in her attendance.
Please peruse websites listed for more information. THANK YOU for advocating for our kids every single day.
An Educator’s and a Parent’s Guide to the EDS Child
Ehlers-Danlos Hiding in Plain Sight
The Ehlers Danlos Society
31 Random Facts About Ehlers Danlos Syndrome
21 Symptoms Kids With Ehlers-Danlos Syndrome Had That Weren’t ‘Growing Pains’
Kathy Ripple-Gilmour lives in Cherry Hill, NJ with her husband Davis and two children, Taylor and John. She was a 1st-grade teacher for over 11 years and earned a Masters in Reading Education. Kathy is devoted to finding a better quality of life for her daughter and all EDSers.