“My daughter was just 11 when she was bitten. Within a month, she was in a wheelchair. It took 18 months to get a diagnosis — but with treatment, she recovered. That’s why awareness is everything.” — Kathy Forde, Tick Talk Ireland.
On a recent episode of Disability Matters on 92.5 Phoenix FM, host John Comiskey spoke with Kathy Forde from Tick Talk Ireland — an organisation dedicated to raising awareness about Lyme disease and supporting those affected by it.
“Tick Talk was founded in 2009 by two Lyme sufferers, Jenny O’Dee and Janet Fitzgerald,” Kathy explains. “Back then, there was almost no information or support for people living with Lyme disease in Ireland. Today, we’re still entirely volunteer-run — helping others through education, advocacy, and sharing lived experiences.”
What is Lyme disease?
Lyme disease, or Borreliosis, is a bacterial infection transmitted through the bite of an infected tick — and sometimes through horseflies or mosquitoes. “The bacteria is called Borrelia and has a corkscrew shape,” Kathy explains. “That’s what allows it to move through the body and affect joints, nerves, and organs.”
While many people associate Lyme disease with a telltale bullseye rash, Kathy warns that not everyone gets one. “Only about 50% of people bitten will ever see a rash,” she says. “Others experience symptoms like fatigue, joint pain, numbness, facial paralysis, and chronic flu-like illness — often without realising it’s Lyme.”
The hidden danger
Because Lyme mimics other conditions, it’s often misdiagnosed. “People can go months or even years before finding out what’s really wrong,” Kathy says. “That’s why awareness is critical — not just among the public, but among healthcare professionals too.”
Kathy’s personal connection to the issue is deeply moving. “My daughter was just 11 when she was bitten. Within a month, she was in a wheelchair. It took 18 months for her to be diagnosed with Lyme disease. With treatment, she eventually recovered — but it shows how serious it can be when missed.”
Prevention and protection
Tick Talk Ireland focuses heavily on prevention. Kathy advises simple but effective steps:
- Stay on clear paths when walking outdoors.
- Wear long sleeves, tuck trousers into socks, and use insect repellent.
- After spending time in nature, check yourself, your children, and your pets for ticks.
- Keep a lint roller in your car — “It’s great for catching any small ticks before they latch on,” Kathy adds.
If you suspect a bite, remove the tick safely using fine tweezers and keep it in a sealed bag. “You can send it for testing or monitor your symptoms,” Kathy advises. “If you start feeling unwell, record everything and contact your GP. Early treatment with antibiotics can prevent long-term illness.”
Raising awareness — one sign at a time
Tick Talk Ireland also campaigns for better awareness nationwide. “We’ve worked with Dr. Jack Lambert and others to place Lyme awareness signs in parks and walking trails,” Kathy explains. “But getting council approval is still a challenge. We’re not trying to stop people from enjoying the outdoors — just to help them stay safe.”
Their current petition calls for increased awareness, public information, and official recognition from the HSE and Department of Health. “We have over 3,500 members now,” Kathy says. “That’s 3,500 stories. This disease hasn’t gone away — and neither have we.”
Stories of strength and survival
Tick Talk Ireland’s website features “Lost to Lyme”, a section where individuals share their personal journeys through illness, treatment, and recovery. “It’s tough reading,” Kathy admits. “But it gives hope to people just beginning their journey — a reminder that you’re not alone, and you can get better.”
Learn more
You can find resources, prevention advice, and personal stories on the Tick Talk Ireland website: www.ticktalkireland.org
As Kathy concludes: “We’re not asking people to stop enjoying the countryside — just to be aware. You wouldn’t go into the sun without sunscreen; you shouldn’t go into nature without repellent. Protect yourself — because Lyme disease is not pretty.”
🎧 Disability Matters airs every Thursday at 4PM on 92.5 Phoenix FM, with repeats Monday 3AM and Tuesday 3AM & 7AM.
Produced by Blanchardstown Centre for Independent Living (BCIL), the show highlights the voices, experiences, and advocacy of Ireland’s disability community.