An Inishowen mother, whos nine-year-old daughter has gone from being a budding gymnast to being bound to a wheelchair, has said doctors need “more education” on Lyme’s Disease.
Speaking about her daughter Jenna’s battle with the “invisible disease”, Fiona Cowan from Moville said more needs to be done by GPs and consultants here in Ireland.
Jenna has gone from a budding gymnast and cheerleader to being in a wheelchair in under two years. After an 18-month battle with a range of symptoms and visits to doctors the length and breadth of the country, she was diagnosed with Lyme’s Disease, and has since visited consultants in Germany.
“I can’t take it away from her, but I would do it if I could,” she said.
Fiona said symptoms started to appear in January 2015, when Jenna had chronic headaches, and she was unable to get out of bed.
“In September 2015, she came out in two bruise like marks on her shoulders. They weren’t sore to touch so I knew something was wrong,” said Fiona. She said it continued for a further 10 days, and even after blood tests they were no further forward.
“Medically there was no support at all,” she said. Jenna experienced a swollen elbow which was diagnosed as a break, a fracture and then a sprain. It was assumed she was injured during a cheerleading class, but she assured her mother she didn’t fall.
Fiona said one doctor told her Jenna was self harming. “I went ballistic, and I put in a complaint, because they said it in front of Jenna. I knew there was no way she was doing it herself.
“She stopped walking before Christmas 2015 for three weeks. I badgered the doctors for an MRI did one reluctantly. She was transferred to hospital in Dublin, down for 17 days. Seen by a neurologist who’s words were she was ‘fitting it on’ because she did some basic checks.
“We were told, if she choses to walk, she can walk,” said Fiona.
She was sent home to Moville with some exercises from a physiotherapist, but by January 2016 her fatigue was “horrendous” and Fiona was unable to get her out of bed. By February 2016, Jenna was unable to walk in a straight line, and her balance was “horrendous”.
Over a period of six days in May 2016, Jenna lost her shoulder length curly hair. “It came out in clumps. We were told she probably did it to herself and she pulled it out. She looks like a cancer patient in some photos because her hair came out in lumps.
“Her eyes would be very purple underneath, she started drooling and started complaining about horrific face pain. You couldn’t touch the face at all,” said Fiona.
Lyme’s Disease was mentioned to Fiona by her chiropractor, as she had heard about the case of Charlie Harkin from Carndonagh who showed similar symptoms.
Fiona decided to do her own research, and she said Jenna “ticked every box”.
“We went to a doctor in Dublin who sent her bloods to England. She came back borderline with an infection.
“Further blood tests were sent to Germany, where they test for bacteria. In Ireland and England blood tests for Lyme’s disease are for antibodies, but because of the nature of the disease, it supresses the immune system to the point where antibodies cannot be made,” said Fiona.
Following the diagnosis in August, Jenna became incontinent. “She was sitting outside my Mum’s house and crawled up the steps. I just knew instinctively something was wrong. My brother went to lift her and she said she just wanted her mammy. She burst into tears and said mammy I’ve wet myself.
“She didn’t feel it coming, she had no knowledge of it until it was done. It happened three times that night.
“Jenna continues to display more and more symptoms. She is still incontinent, she has been six months in a wheelchair. She can move her leg but she can’t put weight on it. Her eyes are affected with blurred vision and dry eyes. She also has sensitivity to noise, she gets headaches and comes out in marks on her arms.
“She is beyond fed up. She has gone from being able to do backflips and forward flips to being in a wheelchair. She lost her hair four times last year.
The family travelled to Germany in December and in January, and will return in March. She was diagnosed with bacterial and two viral infections, and she may have third.
Jenna is currently taking around 20 different tablets per day, including two antibiotics, anti viral medication and numerous vitamins.
“She’s missing out, she’s missed most of second class and all of third. I feel she’s slipping through the net in every which way.
“She is just fit for nothing, she was just so energetic, it’s horrific.”
“There is no compassion, no empathy, and you’re going in to educate the doctor. It’s diabolical. If you had anything else, you would be treated with diginity and compassion and you would be treated with full support. With this disease you’re in full isolation,” said Fiona.
Fiona said because Lyme Disease migrates around the body it “doesn’t tick any box” which can lead to misdiagnosis and a missed diagnosis. Some patients have been diagnosed with fibromyalgia, MS and have also been treated for depression.
“It’s like treading muddy waters. This disease is patients helping patients,” she said.
A Donegal Lyme’s Disease Support Group has been set up to help sufferers in the county. To get in touch, contact Tick Tock Ireland on Facebook.
See Friday’s Journal for an interview with Charlie Harkin from Carndonagh, who also suffers from the disease.