COUNCILLOR Chris Smyth has described feelings of shock after being diagnosed with an “extremely rare disease”.
After undergoing a series of tests at South West Acute Hospital (SWAH) and Altnagelvin over the last month, the UUP councillor has this week confirmed testing positive for Rosai-Dorfman (RD) disease.
RD is characterised by over-production and accumulation of a specific type of white blood cell in the lymph nodes of the body. However, it is not believed to be contagious or life-threatening.
The 23-year-old was discharged from the South West Acute Hospital on Sunday after being admitted on Sunday April 9.
Speaking to the UH, Chris said that while he is relieved to have been finally given a diagnosis, the disease has taken “a major toll” on his body.
“Rosai-Dorfman is unbelievably rare,” he said.
“There are only 650 reported cases of the illness since the disorder’s first description in the medical literature in 1969. After being diagnosed, I did my research about RD, and I was absolutely shocked to read those statistics.
“My brain is sharp, but my body has become slow and weak. I have lost 12kgs in weight over the last four weeks.”
He added, “This time last year, I was running the Belfast marathon but now all I can manage is a single lap of the Grange Park and not much more. However the doctors say I need to stay active. But I’m sure my new puppy, Winnie, who has bags of energy will help with that!”
Chris was immediately admitted into the SWAH hospital after visiting the Tyrone County Hospital’s Urgent Care (UCTC) and Treatment Centre on April 9.
Suffering from a temperature of 40 degrees Celsius and body shakes, he was initially given an emergency drip to lower his body temperature by UCTC doctors.
However during his hospital stay in Enniskillen, he suffered liver function decline, immune system failure, a swollen neck, hallucinations, vomiting and full body shakes.
“I wasn’t in great shape,” Chris said. “The drugs would bring down my temperature, and then it would sky rocket again hours later.
“I was really scared because I didn’t know what was wrong with me, and neither did the doctors. They were throwing around words such as lymphoma, meningitis and TB. The doctors even took a lumbar puncture to test the fluid in my spine.
“At my worst, I was on four different types of antibiotics, three times a day. The tremors were also extremely painful. I was shaking against myself, and my muscles would tire.”
He added, “Weeks passed, and as I remained so sick, I was given an emergency CAT scan which flagged up abnormal cell activity in my neck. So I was sent to a specialist at Altnagelvin who opened my neck up, and took a sample of lymph nodes for testing. When my diagnosis of RD was confirmed, the doctors fine-tuned the drugs I was being given and I now am now slowly on the mend.”
“RD is just one of those things that can come and go, but I’m not contagious so nobody needs to panic,” Chris laughed. “It is a mystery how I got it. Doctors say I may have contracted the disorder while on a past holiday, and I’ve just carried it for years.”
He concluded, “The staff at SWAH were fantastic, I really can’t praise them enough. They were constantly keeping an eye on me, and the work that they put in was unbelievable.
“At the moment I am feeling better, but really weak. However, I’m keeping positive and I am fully focused on my recovery.”
Health Minister Michelle O’Neill has been criticised for using “offensive” language to describe the South West Acute Hospital.