A 33-year-old Illinois woman says it took doctors 10 years to diagnose her with joint disease after she collapsed during a football game.
Megan King, an artist, was 15 when she jumped to catch the soccer ball, but when she fell to the ground, she injured her right ankle, tore the muscle in both of her shoulder blades and damaged her spine.
She walked on crutches for 16 months and had to undergo several operations, but doctors kept telling her she was “depressed” or a “dramatic teenager”.
But Ms King was eventually diagnosed with Ehlers-Danlos syndrome (EDS), a genetic condition that causes collagen – an important joint tissue – not to form properly. Last year, Celine Dion announced she had the condition, which left her muscles stiff and unable to “sing like I used to”.
She has now had 37 operations and is deformed from skull to pelvis, meaning she can no longer move her head up, down, left or right. But Ms King is positive about the future, saying she is “still smiling” and “holding on to hope”.
Megan King, now 33, of Illinois, said it took medics a decade to diagnose her connective tissue disorder known as Ehlers-Danlos syndrome. She is pictured above
Ms King said surgeons had now fused her from her skull to her pelvis. This means she can no longer turn her head from side to side or up or down
Describing her condition, Ms King said: “It can be difficult for many to understand that there really is no movement of the spine.
“I can’t curl up when I have a stomach ache. I’m like a statue My torso doesn’t move, only my arms and legs.
“My parents no longer took me to soccer games and surgeries, they took me to doctor’s appointments, physical therapy and surgeries — many of them out of state.”
There are 13 types of EDS, but the condition affects about 1 in 20,000 to 1 in 40,000 Americans who have it.
It is a genetic condition and currently doctors have no cure for patients with treatment aimed at relieving symptoms.
It is caused by a defect in the genetics that code for collagen, a protein that gives flexibility and strength to connective tissue.
Ms King suffered further injuries in 2020 when she was attacked by a stray dog. This resulted in her needing further operations
Mrs. King is pictured above
People without it can quickly develop symptoms, including unstable or overly flexible joints that dislocate easily and skin that bruises easily.
Ms King only realized she could be suffering from the condition in 2005 when she suffered serious injuries after jumping to catch a football during a game.
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She said: “I landed wrong on my right leg.
“I damaged my ankle, knee and hip and was on crutches for a total of 16 months.”
She sought help from doctors but was told that she probably had no other illness. She said the doctors told her “you’re depressed”, “you’re a dramatic teenager” and “it’s all in your head”.
But in 2014, she met a surgeon who thought she might have EDS. What followed was a series of tests, which then confirmed the diagnosis.
“I went ten years without an EDS diagnosis, despite significant joint problems and failed surgeries due to severe instability. EDS came into effect on the day my accident occurred on September 21, 2005. My accident did not cause EDS. EDS has “woke up”.’
She added: “At first all the medical staff thought I had only injured my right ankle that day. The reality is that I injured my right ankle, right knee, and right hip, all from a bad landing while jumping up to catch a soccer ball. My tissues were weak and torn.
“My left hip and shoulder blades are damaged from a total of 16 months on crutches.
“Suddenly there was a domino effect of injuries. My once strong athletic football body kept my non-existent symptoms at bay.
“After my injury, all exercises stopped and that’s when my joint problems started.”
She has now had 37 surgeries to repair her connective tissue, but these have mostly resulted in limited mobility.
Her first spinal surgery was in 2016 and involved placing a beam lamp and fusing her skull to her spine.
She also had five leg surgeries and about 22 surgeries on her shoulder blades.
But in 2020, she suffered even more injuries after being attacked by a stray dog while on the road. It happened just eight months after her spine and pelvis surgery to fuse them together.
In doing so, she fell to the ground, breaking the bars in her back and loosening the screws. This led to her having to undergo further operations.
Mrs. King is pictured above during physical therapy. She is from Illinois
Ms. King is pictured above in her modified wheelchair visiting a stadium
“To say it was horrible is an understatement,” she said of the dog attack.
“My doctor told me that it takes an extraordinary amount of force to break the bars.
“I was taken by ambulance to the hospital, where I was admitted.
“The bars in my lower back at L5/S1 broke on both sides. The screws in my left sacroiliac (SI) joint became loose.
“I had to undergo T10 pelvic surgery on March 12, 2021. The operation was successful in repairing the defective hardware.
“Unfortunately, I suffered permanent damage to my nerves. I have severe back pain and difficulty walking.
“The nerve pain I experience in my legs burns like crazy. I walk with a limp and cannot walk far due to severe pain.
“A custom wheelchair had to be built that fits me 100% to relieve some of the pain. My wheelchair opened my world to me.”
Ms King said she was speaking out to raise awareness of the condition.
She said: “I just want to emphasize how important it is to stand up for yourself.
“I am quiet by nature and very shy. The thought of having to stand up for myself or pitch an idea to medical students was terrifying to me. You know your body best.
“You know what you’ve been through. Learn as much as you can. The hours of research I have done are endless.
“When my doctors didn’t know what was going on, I thought I might as well try to help. Learning the language of medicine and being able to communicate with my doctors made a huge difference.
“When I think back on what I’ve been through, it’s scary to think where I would be if I hadn’t spoken out.
“When I’m in pain, there are often times I don’t want to go outside. Then it dawned on me that either I was going to hurt myself at home, or I was going to hurt myself while I was having fun, while going to the movies or to a restaurant.
“I think it’s important to find a healthy balance between being able to walk out with pain and living your life. Don’t put a limit on what you can achieve. Realizable goals go a long way.’
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
