By Scott Thompson
MEET THE inspirational girl battling a genetic disorder that caused her BRAIN TISSUE to slip into her SPINAL CANAL and who after a failed attempt at corrective surgery was ignored by doctors until she googled her own symptoms – leading to a diagnosis where she was told that her skull was CRUSHING HER BRAIN.
Vlogger and artist, Christina Doherty (23), from Woburn, Massachusetts, USA, was born with Ehlers-Danlos Syndrome (EDS), a genetic mutation, which affects a protein called collagen that helps keep the body together.
Although EDS is a genetic mutation present from birth it wasn’t really evident until Christina was 10-years-old. In 2006, on Christmas Eve, her whole family got the flu and although everyone else got better, Christina didn’t.
For the next couple of years, Christina’s family were convinced that she had an auto-immune disease. In 2012 she started seeing gastrointestinal (GI) and allergist professionals but nothing was found.
Christina was always tired and contracting viruses but when she was 16, she was suddenly unable to read and although she could see the words on the page clearly, they just didn’t make any sense to her. Shortly after that came vertigo, then paralysis, seizures, ringing in ears, fainting, headaches and confusion.
Later, in 2012 she had a MRI scan where doctors discovered that brain tissues were extending into her spinal canal. Following this, Christina underwent emergency surgery and although scared she was overwhelmed at the prospect of finally getting her life back.
Unfortunately, after surgery things got worse, she was having all the symptoms she had before but now she was also experiencing mini strokes.
“EDS is genetic therefore it is present from birth. For me however, symptoms started when the whole family got flu when I was 10-years-old. My family got better, but I just didn’t,” Christina said.
“My symptoms started on the mild side with mostly just GI 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.
“2012 I had a brain MRI scan and they found an abnormality called Chiari Malformation where my brain tissues were slipping into my spinal canal. I had emergency surgery and remember feeling overwhelmed because I thought I was finally going to get my life back. I was wrong.
“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.
In 2013 Christina was watching a documentary on EDS. After identifying with the symptoms described by others, she took out her laptop and started Googling EDS and within one month she had the diagnosis she so badly needed.
Christina began seeing neurological specialists and was told that her skull had started to crush her brain. She has since had more than 10 surgeries to fix this including having her spine fused in place, from her skull to her tailbone. She has also had a similar operation to fuse her right leg bones together as her foot was at risk of slipping away.
To keep her going she now has to endure a tiring daily regime of 30-40 tablets a day. These had to be crushed and injected into her stomach because she’s couldn’t swallow. She also had dialy rehab exercises and nebuliser treatments.
“I saw a special documentary on TV about EDS. I grabbed my laptop and started Googling it. Then within just one month I finally got the diagnoses,” Christina said.
“I started seeing a neurosurgical specialist in EDS. They found because much of my skull had been removed it was crushing my brain and nearly slipping off altogether. I can’t count the surgeries on two hands, but they included having my spine from my skull to my tailbone fused together to stop me from falling apart.
“I also had a similar operation to have the bones fused together in my lower leg as I was at risk of my foot slipping away.
“Until a few months before the end of 2018 I was also super sensitive to foods, smells and even some types of water. I still wear a mask in public today.
“Besides my daily regime of endless medications, rehabilitation exercises and a nebuliser to help me breathe. My life has become a race against time to literally try to hold myself together before I fall apart.”
Despite all the trials that Christina has had to deal with she still remains incredibly positive. She refuses to allow her illness to become who she is.
Christina cherishes some of the most simple things in life like the air she breaths, flowers in gardens or public spaces, foods and different people.
She looks forward to the future, travelling to Canada and the United Kingdom.
“My friends and family have been extremely supportive. Friends often change when you go through life changing events, but I am now surrounded by people who just ‘get it’ and they have become positive influences in my life,” she said.
“I just love everything about life. The silver lining when being ill are the simple things; the fresh air, foods, flowers and people. 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.”
You can follow Christina’s journey on Instagram