It's Race Day!!
July 16, 2017
Thank you for coming to my fundraising page.I will be attending the 5K to Fight Histiocyctosis run in NYC this July. I will be joined by fellow survivors and family of those who lost their battle to HLH. Donations go directly towards Histiocyctosis Research. Please help raise awareness by sharing my story, and consider making a donation toward HLH research.
Here's my story: June 2014, I am 18years old and had just completed my first year of Nursing School and my first year University. One afternoon, I noticed a large lymph node in my neck. I felt fine otherwise. But knowing this was not normal, I got it checked and then was sent for bloodwork. Everything came back negative. About a week later, I began brewing flu-like symptoms: severe fatigue, aches, and a fever of 39.5 Celsius that Tylenol could not control. First visit to our Emerg unit I was sent home on antibiotics. Few days later, I was still running a temp of 39.5 and back to Emerg I went. I was instantly admitted, and the first few weeks in hospital are a bit blurry. A lot of medications and tests. I was consulted by a new specialist, or two, everyday. I was a mystery case, with multiorgan involvement. Bloodwork 3x a day, CT scans, Bone Marrow Aspirations, Lymphnode aspirations, Lumbar Punctures, Echos, Ultrasounds, Chest XRays, MRIs, Blood Cultures, and the list goes on. Eventually, my blood samples was packaged and sent off to three different locations, and doctors were now consulting outside of Newfoundland, and outside of Canada, for answers.
Three week since being admitted, I recieve a confirmed diagnosis by a retired physician in Toronto: Hemophagocytic Lymphohistiocytosis (HLH).
I am told HLH it is a rare, autoimmune blood disorder where my own immune system is in overdrive, overproducing and attacking my own body. Occurs in approx 1.2 in 1Million. "It is not a cancer, but we treat it like one". I am given 50/50 chance of survival.
What felt like should be the end of feeling unwell, was only the beginning. I started 6 weeks of treatments, sent home and closely monitored. I responded well, we were able to suppress my immune system enough to halt the process. I am considered to be in remission at this point. It took my spleen, liver, and kidneys a few months to fully recover, fortunately I have no long-term damage to these organs. I was still receiving treatment in September 2014, and I was very weak, which meant taking a year off nursing school and beginning months of Rehab to learn to walk and run again.
To date, I am in full remission, have just completed my 3rd year of Nursing at Memorial University, and enjoy hiking the beautiful trails of Newfoundland. With more research, we can have more information to better diagnose and treat HLH.