Touching Lives - October 2009
My world turned upside down
As Action Medical Research joins forces with the MS Society to fund the first major UK scientific study into how multiple sclerosis (MS) develops in children, we hear from one family about the impact of the disease.
When Rachel Courtney said she had a ‘fuzzy’ head and felt exhausted the day after a family party, her mum Maggie thought nothing of it; after all, the day before had been a fun, busy day, it was no wonder her daughter felt drained. Even when Rachel felt so tired later that she slept on the sofa for several hours, the family had no idea this would be the start of a chain of events that would see the energetic, karate-loving youngster diagnosed with MS.
While the tiredness wasn’t unexpected, the following day brought something more worrying. Rachel, then aged 12, woke up with a ‘wonky’ left eye. Although she could move it, it was pointing down and outwards.
This lasted for about a week, during which time she saw a doctor and neurologist, who diagnosed acute disseminated encephalomyelitis or ADEM. This is an illness that causes inflammation in the nervous system and is most commonly seen in children. It usually follows a viral infection – which would explain the headache and tiredness – and while the disease has similarities to MS, for most it will be a one-off flare-up that they recover from within a few weeks or months with treatment.
Three months later Rachel experienced pins and needles down her left side. Doctors said it was a continuation of the ADEM, and she was just taking a bit longer to recover.
Almost a year after her eye had gone funny, Rachel’s body went numb from the armpits down. She was terrified. “I didn’t feel right – my legs were rubbery and wouldn’t move. I couldn’t feel my body. Mum called an ambulance,” she recalled.
In hospital, Rachel had a series of blood tests, a lumber puncture and an MRI scan. The results showed that she had MS. It was just days before her 14th birthday.
Mum Maggie said: “Deep down we knew that something really wasn’t right by this time but I didn’t believe for one minute that it would be something as serious as MS. Telling her was the most difficult thing I’ve had to do. I agonised over it.”
When she was told, Rachel was understandably very frightened: “My heart sank, I thought I had cancer and would die,” she said.
Rachel has relapsing remitting MS, the most common form of the condition in children and teenagers. It means her symptoms come and go and their type and severity vary dramatically. One day she suddenly went numb while out shopping. This lasted for three months, during which time she had to use a wheelchair. At the moment Rachel is generally well but MS is very unpredictable and things that most people take for granted can suddenly become very difficult.
“It can be quite random and feels like her body is out of control,” says Maggie. “The other day she suddenly lost the grip in her hands. She burst into tears and shouted ‘mum my hands won’t work’. The strength had just gone and she couldn’t pick things up properly.
“There are also a lot of hidden symptoms. Some of the time she seems fine to look at but may be struggling with lack of energy or mood swings, or finding it very difficult to concentrate.
“Some friends at school have found it hard to understand and there have also been misunderstandings with teachers. Because Rachel often looks well they don’t realise she’s having problems.
“Her school now is very supportive, for example her physiotherapist can go and see her there so that she misses fewer lessons. The extra help has boosted her confidence.”
Rachel said: “It’s more difficult to fit in at school when you keep missing it. I felt strange and alone and didn’t want to go because people didn’t understand what I was going through. For a long time I stopped going out and spent more time with my family. I’ve had to make new friends.”
With her balance and co-ordination affected, Rachel has had to give up hobbies she previously enjoyed, such as karate and kick boxing, but she still goes swimming.
“Some days I’m happy and don’t have a care in the world, but on others I feel like I am all alone. I’m scared of falling over – you can’t see that my balance and my eyes aren’t working properly. With the help of my nurse, Chris, and my family I can take my treatment and stay positive. My mum says they are making a cure and I just have to wait. So I'm waiting.”
Despite her illness, Rachel says she is still as ‘mad as ever’ and loves to laugh. She enjoys looking after younger children and hopes to work in childcare one day.
“Rachel’s consultant has said she is following a typical course for a child with MS and they hope things will settle down,” says Maggie. “The million dollar question is when, and that’s something they can’t tell us at the moment.”