What is Ehlers-Danlos Syndrome? Woman turns into 'human statue' 10 yrs after 2005 soccer injuries
LAKE ZURICH, ILLINOIS: Megan King could not fathom how a soccer injury in 2005, when she was 15, would turn into something that would affect her for the rest of her life. The Illinois woman, now 33, had leapt to grab a soccerball during a game, injuring her spine, both shoulder blades and right ankle as a result of her forceful fall to the ground. It took physicians 10 years to ascertain that she had a joint issue. Now, she reportedly said that she had Ehlers-Danlos Syndrome (EDS) due to which she had turned into a "human statue."
King underwent multiple surgeries and spent 16 months using crutches, but physicians kept telling her she was "depressed" or acting like a "dramatic teenager." It was only after further tests that she was diagnosed with EDS, a genetic condition that prevents collagen, an important joint tissue, from forming normally. She has undergone 37 surgeries and is now bonded from the skull to the pelvis, making it impossible for her to move her head in almost any direction. King, however, is upbeat about the future and said that she was "still smiling" and "holding onto hope."
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'I'm like a statue'
Speaking about her condition, King said, "It can be difficult for many to understand that there is truly zero spine motion. I can't curl into a ball when I have a stomach-ache. I'm like a statue. My torso doesn't move, only my arms and legs. My parents went from taking me to soccer games and practices to doctor appointments, physical therapy, and surgery- many of which were out of state," per Daily Mail.
There are 13 different forms of EDS, yet only one in 20,000 to one in 40,000 Americans get it. Due to the genetic nature of the condition, doctors are only able to treat the symptoms. The disorder is brought on by a genetic flaw in the collagen protein, which gives connective tissue its strength and flexibility.
When was Megan King diagnosed with EDS?
King had no idea that she might have EDS prior to 2005. She stated, "I landed wrong on my right leg. I damaged my ankle, knee and hips and I was on crutches for a combined total of 16 months."
King sought assistance from doctors, but was informed that she most likely didn't have any other conditions. She reportedly said that doctors told her, "You're depressed," "You're being a dramatic teenager," and "This is all in your head." She did, however, meet a surgeon in 2014 who thought she might have EDS. A series of tests gave confirmed her worst fears. In 2015, she was diagnosed with EDS.
Most of the surgeries that King underwent have resulted in a reduction in movement. In 2016, she underwent her first spinal surgery, which involved fusing her skull to her spine and wearing a halo brace. Additionally, she has undergone 22 surgeries on her shoulder blades and five on her legs.
'I just want to emphasize how important it is to advocate for yourself'
King reportedly said that she was speaking up to increase awareness about the problem. She said, "I just want to emphasize how important it is to advocate for yourself. By nature I'm quiet and I'm very shy. The thought of having to stand up for myself or suggest an idea to the doctors who went to medicalschool was horrifying to me. You know your body best," as reported by the Daily Mail.
King said, "You know what you've been experiencing. Learn as much as you can. The hours of research I've done is endless. When my doctors didn't know what was wrong I figured then I may as well try to help. Learning the language of medicine and being able to communicate with my doctors made a big difference."
"When I think back on what I've been through, it's scary to think where I'd be if I hadn't spoken up," King said, adding, "With pain, there are a lot of times I don't want to go out. Then it dawned on me that I'm either going to hurt at home or I'm going to hurt while having fun going to a movie or out to a restaurant."
"I think finding a healthy balance of being able to get out & about with pain is important to living your life. Don't put on a cap on what you're able to achieve. Attainable goals go far," King concluded.