Ever since Neil Turley’s wife was diagnosed with Lyme and Morgellons Disease following a tick bite eight years ago, he has watched her struggle.
Wanting to show how much he admired her strength, he has organised for The Harris Museum in Preston to be lit up in lime green for two weeks to raise awareness of the debilitating illness.
Miranda Turley was overwhelmed by Neil’s big act of love, and she hopes she can shine a light on the condition that has devastated her life.
The 43-year-old from Ribbleton was diagnosed with Lyme Disease and Morgellons (a chronic form of Lyme Disease) in 2016, after displaying symptoms for five years, following a tick bite.
The condition has left her with no hair, no eye lashes, chronic fatigue, sores and fibers coming from her skin.
She said: “I was bitten under my arm by a tick in 2011 but I didn’t realise at the time how it would cause Lyme Disease.
“I was in my husband’s step-dad’s house in Fylde Road, Preston, which he had been renting out but the tenants had wrecked it and left dog and cat faeces everywhere. When I picked up the carpet, I was bitten under the arm.
“The day after I could not move, as my ribs hurt but I just rode it out.
“Then I started noticing dry skin on my eye lids and my hair was breaking and I started to lose it.
“Fibers started coming out of my skin, which look like clothes fibers.
“I am in pain all the time and every bit of my skin hurts to touch.
“The fatigue is overwhelming. I have arthritis in my knees and I am having physiotherapy on my back.
“Both hot and cold weather affects me, my heart often races and I feel tightening pains in my chest. There have been points where I thought I was dying.”
This has had a wider impact on Miranda’s family as up until she fell ill, she acted as a carer for her 23-year-old daughter Jennifer Lee, who has the mosaic form of Edward’s Syndrome.
The couple also have to look after their other two children, aged 16 and 14, and Neil has his own health concerns following a serious head injury in 2015.
Miranda added: “Neil had a carpentry business but he had to give it up to look after me and he had to take on the role of carer to Jennifer.
“But then Neil smashed his head on the side of the toilet when coming out of the shower and has not been the same since. He landed that hard he broke the toilet bowl.
“It changed the shape of his head and he couldn’t talk for a few days after.”
Knowing how much the Lyme and Morgellons Disease has impacted on Miranda’s life and mental wellbeing, Neil wanted to do something big to show her she is not alone.
Neil, 39, said: “Lyme Disease is not really acknowledged and since Miranda has been bitten, our lives have really gone downhill.
"I feel Lyme sufferers are being ignored and Miranda was classed as delusional for five years until her diagnosis.
"We have struggled financially and there are so many medications and vitamins that are needed to help them get through their daily struggles that we have to pay for.
“This is not for a particular awareness week but for our own personal journey as we want to raise more awareness about the illness.”
Miranda added: “I am overwhelmed Harris Museum has agreed to do this.”
Stephen Walker, operations manager at The Harris Museum, in Preston, said: “We receive quite a number of requests to show our support and often we are able to do that. We buy in theatre gel which we lay over the white lights on the front of the facade covering the central area on the stair case from the Flag Market. We thought we would run for two weeks to help Neil raise awareness.”
The lime green lighting will be on show from late afternoon every night until Wednesday October 16.
What is Morgellons Disease (MD)?
It is a rare disorder characterised by the presence of fibers underneath, embedded in, and erupting from unbroken skin or slow-healing sores. Some people with the condition also experience a sensation of crawling, biting, and stinging on and in their skin.
These symptoms can be very painful. They may interfere with your daily activities and the quality of your life.
The uncertainty surrounding the disorder makes some people feel confused and unsure of themselves and their doctor. This confusion and lack of confidence can lead to stress and anxiety.
MD is controversial because it is poorly understood and is often considered a psychiatric illness.
Although recent studies seem to show MD is a true disease, many doctors still think it is a mental health issue that should be treated with antipsychotic medication.
The most common symptoms of MD are the presence of small white, red, blue, or black fibers under, on, or erupting from sores or unbroken skin and the sensation that something is crawling on or under your skin. You may also feel like you’re being stung or bitten.
Other symptoms of MD are similar to those of Lyme disease, and may include:
Joint aches and pains
Loss of short-term memory