Co Down woman Eilish Farrell on her crippling neurological condition
Eilish Farrell tells Stephanie Bell how it took years before specialists were able to pinpoint her crippling neurological condition.
A Co Down woman who has battled the horrifying symptoms of a rare genetic disease which went undiagnosed for almost 20 years is hoping to reach out to other sufferers in Northern Ireland.
Eilish Farrell (53) from Newry has teamed up with a national charity to raise awareness of Charcot-Marie-Tooth (CMT) — a chronic neurological condition which can cause balance problems and falls, pain, fatigue and deformities in the hands, lower legs and feet.
The awareness month, which runs throughout September, has been organised by the support group Charcot-Marie-Tooth UK to reach out to sufferers who, like Eilish, largely go undiagnosed.
This little-known neurological condition has completely destroyed the quality of life for the Newry mum of one who is married to Michael (53), a digger driver.
The condition struck suddenly immediately after Eilish gave birth to her son Sean, who is now 18 and studying to be a photographer. She experienced weakness in her arms and pain in her feet and couldn’t even hold her new baby.
Since then the condition has developed rapidly. For many years now Eilish has been virtually housebound and lives with chronic pain.
Diminished sensation in her hands means that many things most of us take for granted like opening bottle tops, tins, packets, tying laces and cooking are impossible for her.
She says: “I was pretty healthy until I was 34, but when I was pregnant with Sean I started experiencing severe tingling, numbness and pain in my feet.
“The day after my son was born, I tried to get out of bed, but had such intense, burning pain in my feet that I couldn’t walk.
“I had no feeling in my arms and when the nurse came to hand my baby to me I couldn’t hold him.
“It continued for the duration of my hospital stay and when I was discharged I had to go and live with my parents for six weeks because I couldn’t look after my son.
“As a new mum it was very difficult not to be able to hold and change your own baby. I felt worthless as a mother not being able to look after my own child.
“Even when I went home I found it increasingly difficult to care for my son because of the burning pain, numbness, tingling and weakness that travelled up my legs to my knees and into my hands quite quickly.”
As her condition continued to worsen over the years, Eilish was seen by numerous neurologists and underwent many tests.
However, she wasn’t diagnosed until last year when she was sent to London to be tested by the UK’s top neurologist Professor Mary Reilly.
Eilish says: “I was admitted to hospital for lots of tests including a lumbar puncture, nerve conduction studies and an MRI scan — but they came back clear, so the neurologist classed it as ‘idiopathic peripheral neuropathy’, which means the cause is unknown.
“I was then prescribed medication for neuropathic pain, which helped make the pain more manageable.
“This was the diagnosis for the next 17 years, during which time I saw many neurologists in both the north and south of Ireland, and several orthopaedic surgeons.
“I even tried homeopathic medicine but no one could give me an alternative diagnosis. “
Meanwhile, she was living with constant pain, numbness, sensory disturbance and motor weakness, affecting her joints and muscles.
Due to muscle atrophy, Eilish also developed a dropped left foot and her right foot became disfigured with hammer toes, while ulcers have caused severe infections which doctors now fear could lead to limb amputation. Her symptoms have caused constant falls, sometimes resulting in hospitalisation.
She says: “I lost the sensation in my hands, feet and lower legs, and I had a very unsteady gait, and fell often.
“In both 2007 and 2010, I broke my ankle when I fell, and each time it required surgery with pins and plates inserted to stabilise the ankle.
“After the surgery, I hadn’t the same movement in my ankles, and the numbness in my feet, has caused them to become rigid now, with loss of balance and co-ordination.
“Due to the ulcers on my right foot, which I’ve had for 12 years now, I have developed osteomyelitis. It’s an infection of the bone and I’ve been hospitalised three times in the last three years for a six-week course of IV antibiotics,” she adds.
“I’m very unsteady and can’t walk too far at all so I use a wheelchair, mobility scooter or walking stick, depending on how far I am going.
“My orthopaedic surgeon has advised me to have an amputation of my right foot, to prevent the osteomyelitis from spreading to other parts of the body.
“I haven’t agreed to it just yet — as it’s a life-changing decision that can’t be made easily and would have a big impact on my overall quality of life, possibly leaving me to no longer mobilise at all.”
As someone who loved to dress up in heels and enjoyed socialising, Eilish has found it hard not to be able to wear shoes at all.
It is just another of the many hardships she has had to accept and while it might appear trivial to some, for Eilish it cuts right to the heart of her femininity.
She says: “I have no footwear; I don’t own a pair of shoes.
“I haven’t been able to buy shoes on the high street for many years. I have had special footwear made through various hospitals but these haven’t fitted very well.
“As a woman I want to dress nice and wear high heels. I used to be the type when I went on holiday I packed a different pair of heels to match every outfit, I had them in all colours.
“I can’t wear dresses either because I can’t wear shoes and I can’t even put my own earrings on — my husband has to do that for me. It is little things like this which make it even harder to cope with.”
It was in January 2017 that Eilish travelled with her husband to the National Hospital for Neurology and Neurosurgery where she saw Professor Mary Reilly and her team of specialists, who finally diagnosed CMT.
Since then she has been able to contact other sufferers via a Facebook support group which has really helped lift her spirits.
She says: “I was delighted to have been finally given a diagnosis after all those years.
“I found the charity Charcot-Marie-Tooth UK and became a member straight away; it has given me lots of advice and I went to their annual conference this year in Lichfield, where I met the staff who run the charity, as well as other people with the condition, and various health professionals who gave discussions and advice on how to manage CMT.
“Most days because of the pain the only way to pass the time is to go on the internet. Now I can go to Facebook and talk to others who understand and that really helps.” As someone who has a hereditary disease, Eilish is terrified that her son might develop it. Other family members have also experienced milder symptoms but they have yet to be diagnosed.
Eilish adds: “As CMT is a hereditary disease, there is a 50/50 chance that I could have passed it on to my son, but so far he hasn’t shown any symptoms.
“At the minute he doesn’t want a test and I won’t push it. I can only hope it never happens to him.”
Eilish is very aware of the impact her condition has on her son and husband and says she couldn’t have got through without their support.
She believes that a support group in Northern Ireland would help not just sufferers but their families too and says she would love to see people get together to set one up.
She adds: “There is no cure for Charcot-Marie-Tooth disease, and ideally what I’d really like to do is set up a CMT support group in Northern Ireland, so we can all meet and share our experiences, and tips on coping with this debilitating disease.
“If anyone is interested they could contact the national charity and maybe we can work out how to support each other.”
Campaign to raise awareness of Charcot-Marie-Tooth in UK
It is estimated that around 23,000 people in the UK have Charcot-Marie-Tooth, which is named after the three scientists who discovered it.
This month’s campaign aims to raise awareness of the symptoms of CMT among people who have the condition, but have not yet been diagnosed, as well as to make more medical professionals aware of it.
The main symptoms are uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet, leading to balance problems and falls.
CMT UK’s chief operating officer Karen Butcher can trace CMT back six generations in her family.
She says: “There are still too many medical professionals including GPs, physiotherapists, orthotists, surgeons — and even neurologists — that still don’t know what CMT is, therefore an integral part of this year’s campaign will be to educate them about the condition, so they can help make a diagnosis if needed.
“It is also important for us to reach those people who think they might have the condition, but haven’t been diagnosed yet.
“There could be many reasons for symptoms like these, but if you have any it would be a good idea to ask your GP about CMT — early diagnosis helps improve the lives of those with the condition and because there’s a 50% chance it can be passed on from a parent to a child, professional genetic counselling can also be given.”
Charcot-Marie-Tooth UK offers advice on how to manage the condition as well as support with benefits, jobs and family issues.
Find out more at www.cmt.org.uk or contact 0300 323 6316 or donate by visiting www.justgiving.com/CMT.