For the first eighteen years of her life, Christina Doherty suffered from excruciating headaches that affected every part of her life. The young woman who is from Woburn, Massachusetts, had always been sick as a child, but when she turned sixteen, things got so much worse. Her headaches became so severe that she started to get confused and even suffered from paralysis.
As it turned out, her body was “falling apart.” Her skull was crushing her brain down into her spine, and doctors ignored it because they didn’t know how to handle her complex case. When she was eighteen, the now 23-year-old was diagnosed with chiari malformation, which means the brain tissue spreads into the spinal canal because the skull is too small to contain the brain matter and squeezes it down.
Doctors were baffled. They tried surgery and other techniques, but nothing helped her.
The breakthrough came when she was diagnosed with Ehlers-Danlos syndrome (EDS). This is a genetic condition that has far-reaching effects throughout the body because it affects connective tissue like organs, bones, and skin.
To deal with the horrible pain, Doherty underwent ten surgeries.
“My life has become a race against time to literally try to hold myself together before I fall apart.”
Doherty believes that EDS was present in her life since she was 10-years old. Or at least that’s when she believes doctors should have been able to identify it in her.
She remembers the Christmas of 2006. The whole family came down with the flu. Although everyone else got better in a matter of days, Doherty remained sick for much, much longer. It startled her and her entire family. For the next few years, her family believed she had some type of auto-immune disease.
At age 16, she suddenly lost the ability to read.
“My symptoms started on the mild side with mostly just gastrointestinal issues, joint pain, fatigue and constantly getting viruses. For many years, we thought for sure I had some sort of auto-immune disease causing all of this, but nothing was found. Suddenly when I was just 16, I lost the ability to read. I could see the letters clearly, but they meant nothing to me. Then the vertigo started. The world was spinning and shifting around me. Next came paralysis, seizures, ringing ears, fainting, headaches, and confusion.”
An MRI scan revealed that her brain tissue was getting squeezed down into her spinal canal. Emergency surgery removed part of her skull. It didn’t help.
“Things got worse. My surgeon struck me off because he didn’t know what to do. My symptoms were all back, bringing ‘friends’ with them along with mini-strokes.”
She still suffers from complications from the condition but is getting better.
“I just love everything about life. The silver lining when being ill are the simple things. Everything is just so beautiful to me. I can’t wait to travel to Canada and the UK in future. It really does get better. It might be over said, but it’s true. EDS doesn’t always have to be downhill. It is not a death sentence. I can’t stress how important it is to make connections and make use of the many support groups out there.”
What do you think?