Kalamazoo, Michigan. Imagine waking up in excruciating pain every day and having zero answers from any doctors.
Unfortunately, this is an everyday reality for Jessica, a young woman who, after my trips to the ER and no answers to be found, was recently diagnosed with a rare condition called Eagle’s Syndrome.
As stated on the Genetic and Rare Diseases Information Center website, “Eagle syndrome is characterized by recurrent pain in the middle part of the throat (oropharynx) and face.”
This rare syndrome is very painful and can be diagnosed as classical or vascular. Unfortunately, Jessica was diagnosed with both. One diagnosis on each side of her neck.
She first started to notice symptoms in December of 2020 when a muscle knot developed on her right shoulder.
Trapping and squeezing her optical nerve, the pain traveled from her shoulder, up the back of her head, and eventually her right eye.
Constantly in agonizing pain, she decided to go to the chiropractor in hopes of finding some relief.
Unfortunately, her relief was short-lived. Every time she went back, her pain increased, eventually causing her to give up on the chiropractor in general. Thankfully, some of her symptoms seemed to have not happened as often.
GoFundMe; pictured above is Jessica
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Fast forward to August 2021, and she started noticing heart-related symptoms.
“Palpitations, rapid heartbeat, chest pain, exhaustion & feeling breathless from just walking a short distance, etc.”
From August to mid-September, she had a total of 7 ER visits and zero answers, racking up a total of $10,000 in hospital bills.
At this time, she was a small business owner with no insurance to cover her medical bills.
Throwing away money and not receiving any answers, she decided to do the research herself. At the time, Jessica had no idea that this would eventually help her out in the long run.
While researching her symptoms, she came across Eagles Syndrome. Noticing that this was a very rare disease, she decided to look past it until she saw a new sign which made her go to ER and ultimately changed her life forever.
“I started getting a painful click in my throat every time I swallowed. Not only could I feel it, I could also hear it. Painful and annoying. I never realized just how much I swallowed until it became noticeable.”
Fortunately for Jessica, the doctor decided to do a CT scan of her head and neck, which would then show “partially calcified stylohyoid ligaments.”
While the news brought her a little comfort, she left the ER without an official diagnosis. So she reached out to a Facebook Eagle’s Syndrome support group. With the help of her Eagle Syndrome community, she was able to find a doctor that would do the surgery.
Jessica’s situation is tough to face, and she can’t take this challenge on alone. That is why she has posted a GoFundMe account and is looking for any donations to help cover the cost of her medical bills. In return, she understands if you cannot donate at this time. However, if you could share her story to help spread awareness about this rare disease, this may benefit someone else going through a similar situation.
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