During February we highlighted Rare Disease Day by asking our colleagues to share their experiences with us. As one of 300 million people worldwide with a rare condition, 111 Health Advisor Vicky Johnson, answered the call.
Vicky has Chiari Malformation, a condition that causes structural abnormalities at the base of the skull and cerebellum, leading to a myriad of challenging symptoms. Her story underlines the importance of understanding lesser-known health conditions, whilst also serving as an inspiration to those facing similar challenges. In her own words…
“I was diagnosed when I was just 12 years old and was rushed to the hospital for an emergency spinal decompression. It was all so quick, quite bizarre looking back on it and I only remember bits and pieces. They found it on the MRI but, at the time, the symptoms were unexplained because I didn't even know I had the condition. When the specialists first told me what it was, I was absolutely terrified. It felt like my whole world was turning upside down. But over time, I've learned to approach it with a more practical mindset.
“The doctors had to make an incision in the back of my neck to drain the excess spinal fluid below the cerebellum. It was a close call; they said if they hadn’t done that, I might have ended up paralysed. Afterwards, the recovery from the spinal decompression was a long process. It took about a year, and I spent a good chunk of it in a wheelchair.
“Chiari Malformation is a rare condition, so I always find myself having to explain it to people. But I don't mind. In fact, I kind of like spreading awareness about it. Turns out, I'm one of just a handful of people in the UK with this disease. It's hereditary too, so I had to meet with the genealogical department in Sheffield to find out more. When you have a rare condition like this, you kind of find solace in others who are going through something similar.
“The good news is that since the initial surgery, I've been doing pretty well. The syrinx is actually decreasing in size, which is great news. But I still have to go for regular MRIs to keep an eye on things. You become resilient out of necessity, but let me tell you, living with a chronic illness is no walk in the park.
“I used to feel so abnormal because of the condition, but now I see it as something that makes me unique. And I have to say, DHU has been absolutely amazing throughout all of this. The team and my manager have been incredibly supportive, always checking in to make sure I'm doing okay. It really speaks volumes about what a great company this is to work for.”