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For several years, Katlyn Brooks experienced the unsettling sensation of having a ‘bobblehead’ precariously balanced on her neck.
Unbeknownst to her, a single abrupt movement or sharp turn of her head could have been fatal.
This 28-year-old mother from Michigan is affected by a genetic disorder that impairs the proper formation of her body’s connective tissues.
As time passed, the ligaments and joints in her neck became so lax that her skull was scarcely connected to her spine.
By her late 20s, medical experts believe that her neck bones were so unstable that they posed a constant threat to her spinal cord and essential blood vessels, putting her at risk of ‘internal decapitation,’ a condition that is nearly always deadly.
If caught early, hypermobile Ehlers-Danlos syndrome (hEDS) can often be managed with physical therapy and strength and posture training before it becomes life-threatening.
But Brooks told the Daily Mail that chance was stolen from her.
She spent decades begging doctors to investigate her strange symptoms – which included vomiting, dizziness and debilitating fatigue – but was repeatedly told she was anxious, depressed or exaggerating her pain to obtain medication.
The warning signs, she insisted, were there all along.
Katlyn Brooks (pictured here) spent two decades suffering from vomiting, fatigue and, eventually, malnourishment. Doctors didn’t find out the issue until she was on the verge of being internally decapitated.
Pictured above is a scan of Brooks’ neck prior to surgery. She told the Daily Mail her head felt like a ‘bobblehead’ on top of her neck
As a kindergartener in the early 2000s, Brooks carried a giant trash can from classroom to classroom because she had to vomit so frequently – likely due to the instability in her neck affecting her balance.
She was also the only child in her class who regularly asked for naptime – a hallmark of the chronic fatigue that hits hEDS patients even in childhood, long before the condition is recognized.
At just nine years old, she was prescribed the antidepressant Prozac as doctors insisted her symptoms were simply anxiety and panic attacks.
When her symptoms worsened in her 20s, Brooks said doctors blamed them on depression – especially after the death of her sister in 2020 and the stillbirth of her daughter in 2022.
‘My physical symptoms were still all too real and debilitating,’ Brooks told the Daily Mail.
‘My pain was dismissed, I was treated as a drug-seeking patient, and I started to question my own mental health. I was being treated like a joke.’
Experts estimate at least 100,000 Americans have hEDS, but the true number may be several times higher because there is no genetic test.
Diagnosis relies solely on symptoms many doctors aren’t trained to spot, which means patients face years of misdiagnoses, often being told their symptoms are psychological.
Brooks suffers from gastroparesis as a result of her cervical vertebrae being compressed. At one point, she weighed just 85 pounds
Brooks is pictured after surgery to correct her CCI. She said she felt ‘instantaneous’ relief but still needs to have a procedure to correct a tethered spinal cord
Hypermobile Ehlers-Danlos syndrome occurs when the body doesn’t produce collagen properly. Collagen acts as the body’s scaffolding, giving structure and strength to skin, joints, ligaments, blood vessels and organs.
When it is faulty, joints can become loose and ligaments fail to stabilize bones.
Blood vessels and nerves also become compressed, reducing blood flow to the brain or other organs, leading to dizziness, fainting, headaches or problems with heart rate and blood pressure.
The disorder often runs in families. Though, no specific gene has been definitively linked to hEDS, which makes testing and diagnosis tricky.
Doctors rely on clinical signs such as fatigue, dizziness, migraines and digestive issues.
For Brooks, these digestive issues manifested in April 2024.
Around that time, she began non-stop vomiting and experienced rapid weight loss, causing her to dwindle down to just 89lbs and be admitted to the hospital for severe malnourishment.
‘I was just skin and bone,’ she said.
Doctors discovered that her stomach had essentially stopped moving food through and absorbing nutrients.
Normally, the digestive tract relies on strong connective tissue to help its muscles contract and push food forward.
But in hEDS patients, faulty collagen makes those tissues weak and overly stretchy, which can slow or even halt stomach motility.
Doctors finally diagnosed her with hEDS – but then they made an even more terrifying discovery.
Brooks spent about a week in the hospital (pictured here) after surgery
Brooks, pictured here with her husband and her son, finds herself constantly checking her now eight-year-old son’s neck and watching for signs of hEDS, as there is no genetic test to find it
MRI scans of her neck showed that at least 20 years of ‘wear and tear’ from undiagnosed hEDS had caused the ligaments connecting the occipital bone in Brooks’ skull and the first two vertebrae in her neck to loosen, a condition called craniocervical instability (CCI).
Those unstable vertebrae had been clamping down on her vagus nerve, which controls muscles in the stomach and intestines.
Startled doctors said Brooks’ case was so severe that any sudden movement could be enough to cause an internal decapitation.
Braking too hard in the car, being pushed in a crowd or even just missing a step on the stairs could have been enough.
‘It’s like a bobblehead,’ Brooks said. ‘You can literally feel how loose your head is. It just kind of flops. I can feel the back of my head resting on my upper back.’
Brooks was in desperate need of surgery to keep her neck from collapsing in on itself.
Until then, she was forced to wear a neck brace all day and keep her head still as she frantically searched for a doctor willing to perform the operation.
Brooks now has to have IV vitamin therapy to replace lost nutrients, as her gastroparesis has limited her to only a handful of carbohydrate-rich foods
The surgery, a posterior occipitocervical fusion, helps stabilize the connection between the skull and the neck by fusing loose bones together to make them less wobbly.
Yet, despite the precarious situation Brooks had been forced into, no doctor in Michigan would agree to perform the rare and precise surgery.
‘I’ve been dismissed by pretty much every neurologist and neurosurgeon within my area, and that’s even counting going three hours from my home and more,’ Brooks told the Daily Mail. ‘We traveled just about everywhere in Michigan.’
On Christmas Eve, 2024, Brooks’s family received the call they had been waiting for. It was a neurosurgeon at the University of Cincinnati who insisted on getting her in the operating room ‘as soon as possible.’
‘I was cutting it too close to having spontaneous internal decapitation,’ Brooks said. ‘They were like, “We want you to have surgery almost immediately.” Thank god I answered [the call].’
Brooks told the Daily Mail that she still struggles with distrust of doctors because her condition went undiagnosed for so long, but she is thankful for the few physicians who spotted her hEDS and CCI
Brooks underwent the four-hour operation in February 2025, which provided ‘pretty much instantaneous relief’ from the crippling nausea and pain and in her neck, abdomen and head.
However, insurance did not cover all of the costs, and between surgery, hospitalizations and medication, Brooks estimates she is in about $800,000 of debt.
Her family has set up a GoFundMe to help raise money for medical costs.
However, she has since suffered a tethered spinal cord, which occurs when the spinal cord attaches to the wall of the spinal canal, limiting her movement and making it difficult for her to leave the house or hold down a job.
Brooks is scheduled to have corrective surgery next month to ‘release’ the spinal cord and improve her mobility and prevent any further neurological damage.
Brooks now weighs 136 pounds and is also no longer has to receive her nutrition via a feeding tube and can eat a select amount of foods, largely those high in carbohydrates and low in fiber such as plain pasta, potatoes, butter and rice, as these are easier to digest with gastroparesis.
Fiber slows down the process of stomach emptying, which is already delayed in gastroparesis, and could lead to blockages.
To make up for lost nutrients, she receives IV vitamins multiple times a week. She cannot hold down a job due to her medical needs but hopes that fixing her tethered spinal cord will help her gain back some independence.
Brooks said: ‘It’s fascinating how much the spinal cord and the brain are sitting the different types of nerves and arteries that they can put pressure on, can affect your entire body.’
She still wrestles with anxiety and distrust of most doctors who are unfamiliar with her condition because it went undiagnosed for so long and led to near-deadly consequences, telling the Daily Mail that she ‘has to be ready to drop dead’ before going to a hospital now.
She also constantly finds herself checking her eight-year-old son’s neck and watching over him, as hEDS runs in families but has no genetic test to look for it.
However, she credits those who finally did take notice after two decades of suffering.
‘I’m living with these rare conditions that don’t have a rule book,’ Brooks said. ‘It really took a village of doctors who were curious and willing to listen.’
