Today marks the start of MS Awareness Week, which aims to increase awareness and understanding of an invisible condition that affects three times more women than men. Amanda has kindly shared her story with us.
Around 130,000 people in the UK have multiple sclerosis (MS). Research shows that up to a third have kept their diagnosis a secret, partly due to concerns about a lack of understanding from others, making it even more important to spread awareness of their stories.
Amanda Dulieu was a high-flying banker living in the German financial hub of Frankfurt with her husband Neil when she was diagnosed with MS a month before her 30th birthday. “I’d been noticing odd things here and there,” she explains. “Long walks were exhausting, I’d fall asleep after gym workouts, and had constant pins and needles in my feet.
“Then one day, while walking along the street, I lost complete control of my bladder and bowel. I knew something was very wrong because I didn’t feel it happen at all.” Mortified, and terrified about her health, Amanda understandably began catastrophising. “As I got into bed that night, I told Neil that in case I didn’t wake up in the morning, I needed to be sure he knew I loved him.”
When she did wake up in the morning, Amanda couldn’t feel her legs from the waist down. Days later, after several tests and an MRI scan, she was diagnosed with relapsing remitting MS. This is the most common form, and sees someone experience an onset of symptoms, known as a relapse, followed by a period of stability in the illness, known as remission.
A disease of the central nervous system – your brain and spinal cord – multiple sclerosis causes the immune system to attack the body’s nerve cells, damaging the myelin sheath, the protective layer of fatty protein that surrounds them.
This process, called demyelination, disrupts messages from the brain, and can cause a huge range of symptoms. Fatigue, balance problems, numbness, pins and needles, weakness of limbs, unexplained pain, cognitive issues and bladder, and bowel problems are all common, although this list is far from exhaustive.
A diagnosis of this chronic, life-long condition can be very hard to come to terms with, not least due to the unpredictability of MS. One person may have an initial relapse, and then experience no more symptoms for many years, while another may progress quickly to disability in a matter of months. The latter is called Primary Progressive MS, which sees early symptoms – like subtle problems with walking – develop slowly, and gradually get worse over time, rather than appearing as sudden relapses. This form of MS affects a smaller percentage of people, which makes it even more important to talk about, spread awareness and understanding.
For many women with MS, a huge worry is that their diagnosis means they will have to sacrifice having children, but in most cases, this is not true. “Women are most commonly diagnosed between the ages of 20 and 30, a time when many may be considering starting a family,” says Laura Amiss-Smith, helpline and information supervisor at MS-UK, a national charity which supports people living with MS.
“It’s now common for neurologists to start conversations about family planning with patients early on, as it can affect which treatments are available. While there is currently no known cure for MS, disease-modifying therapies (DMTs) are used to keep symptoms at bay.”
These drugs can reduce the number of relapses someone has, but as they change the behaviour of the immune system, they can come with serious side effects, and some are not suitable for pregnancy, breastfeeding or even to take in the years preceding conception. “So, if you are planning a family, discuss your treatment options with your neurologist so you can choose the best course of action for you and your baby,” says Laura.
During pregnancy itself, MS seems to be less active, with some experts theorising this may be due to hormone changes. MS also doesn’t affect fertility, although some people can experience sexual problems due to symptoms of the condition.
Recently, researchers have been looking at the role of the menopause’s effects on MS. Symptoms such as bladder problems, hot flushes, and trouble sleeping can overlap both conditions, and some people have reported a worsening of symptoms with menopause onset.
Researchers have speculated that therapies designed to reduce hormone fluctuations during the change may be of benefit for some women with MS but, as with the long-neglected issue of the menopause in general, much more research is needed.
Whether to tell an employer you have MS is something working women often worry about. Thanks to the Equality Act 2010, you are protected by law while at work if you have MS. “This Act requires that employers make reasonable adjustments to help their employee to remain employed,” says Laura.
Reasonable adjustments for MS might include time off for medical appointments rather than having to take sick leave, changes to working hours, or it could be physical adjustments to the workplace, such as the installation of a ramp to allow wheelchair access.
For many women, a shock diagnosis can bring the urge to make the most of every second. After Amanda’s diagnosis, she and Neil made big changes to their careers, and decided to take control of a somewhat unknown future by living life to the full. “We moved to London so that I could keep pursuing my career in banking and have a manageable commute, thus saving my energy for the office,” she says. “Neil had always hated banking and had a passion for the dance music industry, so that’s what he did next, and he excelled and found true job satisfaction for the first time.
“We tend to say yes to everything since my diagnosis, which means our lives have been packed full of positive experiences, many of which I seriously doubt I’d have done had I not had MS. In the back of our minds, we knew that one day it might become a lot more challenging to do things, so our attitude was, why put them off?”
And finally, although diagnosis can be scary, it’s important to realise there is help out there if you or a loved one are affected. Reaching out will help you to feel less alone. “Contact the charities out there, they have so many helpful resources,” says Amanda. “Speak to others who have MS. It really helps to have others reassure you that you can still have a positive and plentiful life. It really shouldn’t stop you doing what you want to do with your life and, as with my experience, it can have a surprisingly positive impact on your life, too.”
If you or someone you know is affected by MS, the MS-UK helpline is available weekdays 10am – 4pm for information and emotional support 0800 783 0518