Ehlers-Danlos Patients Are Represented at Columbus Marathon
Heather represents EDS patients at the Nationwide Children’s Hospital Marathon in Columbus, Ohio on October 20, 2013. Our Columbus EDS Support Group will join Heather to promote EDS Awareness to the public! Each mile marker features a Children’s Champion, each with a different health condition. She will be at mile marker 24. Here is her story:
“After a breakfast of chocolate chip Eggos, a touch of make-up and a quick style to her long wavy ebony hair, 17-year-old Heather Lynch was out the door, ready to begin her senior year.
Heather hasn’t attended a “normal” year of school without surgeries, long absences or hospitalizations since she was in the seventh grade. She was looking forward to the normalness of it all again as she walked through the doors to Wapakoneta High School on Friday.
Her first class of the day was Algebra II at 9 a.m. After that she had several study halls, anatomy, symphonic choir and band. The medications she took in the morning, helped get her through the day.
After school, she took a long nap, extra sleep is a requirement for her. She also packed lunch and snacks to keep her salt intake high. She will continue to take some classes online to give her the flexibility she needs.
“I probably would have cried if I had missed my senior year,” Heather said, although up through the middle of July, there still was some uncertainty if she would be well enough to attend an almost full day of school at the end of August.
It was during a middle school track meet that what was considered normal in Heather’s life came to an abrupt halt. As she was running the 100-meter dash, Heather, who was on the heels of first place, fell hard when her knees gave out. The
fall dislocated her shoulder and tore up her knees, damaging their growth plates.
The fall and worsening conditions during the years after eventually led to a diagnosis of several conditions, including, Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders that cause, among other things, the joints to spontaneously dislocate.
The collagen holding Heather’s joints together is not only faulty — allowing her to bend and contour her arms, legs, shoulders, hands and feet in strange ways — but causes frequent and spontaneous dislocations and subsequent falls.
Heather was falling frequently at school by the time she was in the eighth grade. She had pain in her knees, hips and ankles and for weeks at a time she would be bed or chair bound.
By her freshman year she suffered from severe migraines and had to have her dysfunctional gallbladder removed. At 5-foot, 7-inches tall, Heather’s weight plummeted to 100 pounds.
As her high school years continued, Heather had to drop out of activities she loved because of chronic and severe back pain among other problems she was experiencing. The falls caused other injuries, from post-concussive disorder to a torn ACL — a ligament in the knee.
For a long time the family didn’t know what was wrong. The problems started possibly when Heather was in the sixth grade, but she didn’t get a diagnosis until she was a sophomore.
Before middle school, Heather was never sick, took Judo and could be found doing whatever the boys in the neighborhood were doing.
Her mother said she was always the defender standing up for the underdog and was always tough.
“Finding out there was a name for this was a big relief,” said Heather’s mother, Kathleen Lynch, who also found out in the process that she suffered from the same syndrome, although not as severely.
EDS runs in families and Heather’s grandfather is believed to have had it as well. It is a condition that often shows as “double jointedness” and for which the Lynches would like to see more screenings.
Heather’s web of disorders render her often in such severe pain that she cannot perform daily tasks such as walking, opening jars, or even reading. Postural Orthostatic Tachycardia Syndrome (POTS) causes Heather to faint, her juvenile rheumatoid arthritis (JRA) causes debilitating pain and stiffness, and the EDS causes the falls and injuries, while Heather also suffers from Fibromyalgia, which causes chronic pain.
“The disorders manifested themselves completely over the course of her adolescence, turning an energetic, determined, active young girl to a young woman who could not get out of bed without assistance by the winter of 2012-13,” Kathleen Lynch said. “The hardest thing the parents of a teen with JRA, EDS or POTS do is not nursing, it’s not watching the child suffer, it’s not even the financial aspects of it. It’s learning when to let go, when to let the world do their thing with your kid and not step in and be mom-cop-advocate … especially when your child doesn’t want you to.
“It’s not getting up in the face of the person who seems to want to be harder on your kid because they are disabled, rather than cutting them slack,” she said. “I think there are more people like this in the lives of kids with ‘invisible diseases’ because they are just uneducated about the conditions that are not up in their faces.”
An advocate has come into the school to work with personnel there regarding Heather’s health concerns, especially since there are no visible indications that she is anything but a normal teenager.
Not one to give up, no matter how tough things got, Heather continued to dance, march in the band play in the jazz band for show choir and as part of the drumline Impulse, act in the school play, and sing for the school talent show. She auditioned for Singsation in a leg immobilizer.
Repeated injuries plagued her no matter what she was doing. She tried to train with the track team every year, but hasn’t been able to run track since that first fall.
“The hardest part was it forced her to slow way down,” Kathleen Lynch said, explaining that before her daughter would go from 6 a.m. to 10 p.m. non-stop with school activities.
Heather admitted sometimes it was so hard not to do the regular, every day things that her friends around her were doing, that she didn’t tell her mom everything, so she wouldn’t tell her she couldn’t do something.
“I liked to pretend I was OK,” said Heather, who loves the freedom of driving and is safe doing so as long as she takes her medication.
Her first day of her junior year, Heather was sick with a headache, dizziness and severe joint and back pain, which worsened to the point that she was admitted to Nationwide Children’s Hospital, where she was diagnosed with juvenile rheumatoid arthritis. She spent most of her junior year bedridden, with her mother having to bath, dress and do everything for her, before she was able to finish the year with shortened school days.
Heather’s conditions have no cure and she still suffers from the pain of dislocations and flare ups, but with her latest medications and treatments she had been able to enjoy more of the life of a normal teenage girl and still one to never give up, Heather is determined to have a “normal” senior year.
Her mother says Heather maintains a great sense of humor and her outgoing, bubbly, and often feisty, personality.
After graduation, Heather hopes to attend The Ohio State University on her way to become a veterinarian, a dream spurred by her love of cats and all animals. Heather has rescued every stray that ever came by their house.
She still dreams of running again, but for now, “normal” days being a teenage girl will do.
“We don’t know what the future holds for her,” Kathleen Lynch said of her daughter.
“The one thing we do know is she has a tremendous strength of will and fighting spirit, and she will never give up,” Heather’s mother said. “She is determined not to let anything stop her.”
Heather Lynch, 17, hopes for a cure to the conditions from which she suffers, including Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), juvenile rheumatoid arthritis, and Fibromyalgia. She is asking donations be made in her honor to Nationwide Children’s Hospital. Her family set a goal to raise $2,000 through a fundraising campaign for the hospital. Heather said she wants to give back to the hospital that gave her back her life. Heather is featured as a Nationwide Children’s Hospital Children’s Champion. To donate or for more information, visit nationwidechildrens.org/marathon or Heather’s Hope — EDS, JRA, POTS and FIBRO Warrior on Facebook.
Heather Lynch, 17, hopes for a cure to the conditions from which she suffers, including Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), juvenile rheumatoid arthritis, and Fibromyalgia. She is asking donations be made in her honor to Nationwide Children’s Hospital.”