A 33-year-old Illinois woman says it took doctors 10 years to diagnose her with joint disease after she collapsed during a soccer 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, tearing the muscle from both shoulder blades and damaging her spine.
She walked on crutches for 16 months and had to undergo multiple surgeries, but doctors kept telling her she was “depressed” or a “dramatic teenager”.
But eventually, Ms King was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic disorder that prevents collagen — an important joint tissue — from forming properly. Last year, Celine Dion revealed she was suffering from the condition, which she said was making her muscles stiff and unable to “sing like I’m used to.”
She has now had 37 surgeries 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 10 years to diagnose her connective tissue disorder known as Ehlers-Danlos syndrome. She is pictured above
Ms King said surgeons have now fused her from her skull to her pelvis. This means she can no longer turn her head left to right or up or down
Describing her condition, Ms King said: “It can be difficult for many to understand that there really is no spinal movement.
“I can’t curl up into a ball when I have a stomach ache. i am like a statue My upper body 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 sufferers with treatment focused on 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 sustained further injuries in 2020 when she was attacked by a loose dog. This resulted in her needing further surgeries
Mrs King is pictured above
People without this can quickly develop symptoms, including unstable or overly flexible joints that dislocate easily and skin that bruises easily.
Ms King only realized she could have the disease in 2005 when she suffered serious injuries after jumping to catch a soccer ball during a game.
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.
“Despite significant joint problems and failed surgeries due to severe instability, I went ten years without an EDS diagnosis. EDS started on the day my accident happened, September 21, 2005. My accident did not cause EDS. EDS has “woken up”.’
She added: “Initially all the medical staff thought I only injured my right ankle that day. The reality is 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 were damaged from a total of 16 months on crutches.
“A domino effect of injuries happened all at once. My once very strong athletic soccer body has kept my non-existent symptoms at bay.
“After my injury, I stopped training and that’s when my joint problems started.”
She has now had 37 surgeries to repair her connective tissue, but most of these have resulted in reduced mobility.
Her first spinal surgery was in 2016 and involved placing a halo clamp 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 further injuries after being attacked by a loose dog while out for a walk. It happened just eight months after her spine and pelvic surgery to fuse them together.
She fell to the ground, breaking the bars in her back and loosening the screws. This led to her facing further surgeries.
Mrs King is pictured above during physical therapy. She’s from Illinois
Ms King is seen above in her custom-made wheelchair while visiting a stadium
“To say it was horrific is an understatement,” she said of the dog attack.
“My doctor told me that it took an extraordinary amount of force for the bars to break.
“I was taken to the hospital by ambulance, where I was admitted.
“The bars in my lower back at L5/S1 broke on both sides. The screws in my left sacroiliac joint have become loose.
“I had to have T10 pelvic surgery on March 12, 2021. The operation was successful in repairing the defective hardware.
“Unfortunately, I sustained permanent damage to my sciatic nerves. I have severe back pain and difficulty walking.
“The nerve pain in my legs is burning like crazy. I walk with a limp and cannot walk far because of severe pain.
“A custom wheelchair that fit me 100% had to be built to alleviate some of the pain. My wheelchair opened up my world to me.”
Ms King said she was speaking to raise awareness of the condition.
She said: “I just want to emphasize the importance of standing up for yourself.
“I’m naturally quiet and very shy. The thought of having to stand up for myself or propose an idea to the doctors who were studying medicine 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 figured 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 to what I’ve been through, it’s scary to think about where I would be if I hadn’t spoken out.
“I often don’t want to go out when I’m in pain. Then it dawned on me that either I’m going to hurt at home or I’m going to hurt when I’m having fun going to the movies or going to a restaurant.
“I think it’s important to find a healthy balance of being able to get out and go about with pain, to live your life. Don’t put a ceiling on what you can achieve. Achievable goals go far.’
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is the name for a group of rare hereditary diseases that affect the body’s connective tissue.
Connective tissue supports skin, tendons, ligaments, blood vessels, internal organs and bones.
Different types of EDS are caused by errors in specific genes that weaken connective tissue.
Depending on the type of EDS, the faulty gene may have been inherited from one parent or both.
Sometimes the faulty gene is not inherited but occurs spontaneously.
EDS can affect people in different ways. For some, the condition is relatively mild, while for others, their symptoms can be disabling.
Some of the rare, severe forms can even be life-threatening.
Figures suggest that between one in 5,000 and one in 20,000 people have the condition.
Source: NHS Direct
Rolando Álvarez, in Managua (Nicaragua), on 20 May 2022. Jorge Torres (EFE)
