'I couldn't sit up without fainting - doctors tried to say my rare condition symptoms were anxiety'

A young woman who couldn't sit up for more than half an hour without fainting was finally diagnosed with a rare connective tissue disorder after years of her symptoms being brushed off as mere anxiety .

Crystal Bradley, now 23, spent her childhood frequently using crutches and braces due to her joints dislocating. As she entered her late teens, Crystal began to suffer from debilitating migraines, extreme sensitivity to light and sound, and eventually became confined to her home.

Despite the severity of her condition, medical professionals initially attributed her symptoms to anxiety, yet her pain only intensified. In an attempt to alleviate the excruciating pain, Crystal would often crack her neck and even sought chiropractic treatment for a year, which she later discovered had actually exacerbated her condition.

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After consulting numerous doctors, Crystal received a diagnosis of Ehlers-Danlos syndrome (EDS) in February 2024 -a set of rare genetic disorders that impact connective tissues. Additionally, Crystal was informed she had cervical instability, which involves the loosening of ligaments in the upper spine leading to nerve pain, as well as cerebrospinal fluid leaks and perineural cysts.

To address the fluid leak, Crystal underwent blood patches, a procedure where blood is drawn and then injected into the spinal canal. This treatment has significantly aided Crystal in regaining mobility.

Currently, Crystal wears a neck brace and is contemplating a high-stakes surgery known as cervical fusion to further manage her condition and alleviate her pain. Reflecting on her journey, Crystal, who works as a regulatory chemist in Boston, Massachusetts, shared: "I didn't get diagnosed until I was 23. They were treating me for anxiety. For a while I truly believed that I was making myself sick because I was too anxious."

Crystal grew up with a variety of different symptoms and health problems. She said: "The biggest one for me was my joints would just dislocate. I was always on braces and crutches."

Crystal started to struggle with migraines in 2017 and it became so severe she became housebound. She said: "I had crippling migraines. Migraine like episodes that would leave me in a dark quiet room for day. I had sensitivity to light and sound."

Doctors didn't know what was wrong and would instead treat her for anxiety. She went to college in Boston and saw psychologists and psychiatrists throughout. She said: "I was still left with all the physical symptoms."

Crystal was then told to see a chiropractor and would also constantly crack her own neck and back - which ended up making her undiagnosed cervical instability worse. She said: "Why I was cracking my neck habitually was to release pain.

"I was cracking my whole back as well. I would turn around, grab my hips and twist my back that way. It turns out I was stretching the ligaments and the nerves next to the spine."

Crystal continued to seek answers for her pain but doctors continued to dismiss her symptoms. She said: "They said 'I think you're perfectly fine and you need to see a therapist'."

Crystal got dramatically worse and started fainting regularly in autumn 2023. She revealed: "I started fainting with upright positions and having severe nausea and vomiting as well as swallowing difficulty where my throat will sometimes just kind of give out."

She couldn't stay in a seated position for longer than half an hour without losing consciousness. Following a dislocation of her jaw that necessitated a neck brace, Crystal began her quest for answers.

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After extensive research and grappling with dismissive medical professionals, she suspected it could be something related to connective tissue disorders. Eventually, a neurologist suggested she consult an Ehlers-Danlos specialist directly.

In October 2023 Crystal reached out to several specialists who eventually located one in Baltimore, Maryland, in February 2024. The young woman recounted: "He was positive it was a connective tissue disorder and EDS."

This was the first doctor to affirm her worries, saying 'I believe you'. Her specialist recommended immediate treatment for her cerebrospinal fluid leaks. Blood patches were applied in late February 2024. Crystal joyfully shares: "I was back on my feet. It went well."

After her recovery, medical guidance prevented her from any bending or stretching for three months; however, eventual physical therapy followed. Now, doctors suspect a tethered cord condition in Crystal and are evaluating potential surgical procedures. They consider disc removal and vertebrae fusion but apprehend potential degenerative risks post-surgery.

Presently, Crystal's pain fluctuates, despite which, she manages to remain professionally active. She is optimistic that she is finally on the path to receiving the assistance and solutions she requires.