Last Updated on 23/09/2023 by Emma Purcell
Today marks the first-ever European Myasthenia Gravis Day, a symbolic date that will shine the light on this neuromuscular autoimmune disease that affects between 56,000 to almost 100.000 people in Europe.
This day, initiated by the All United for MG coalition, which unites patient associations and representatives from seven countries across Europe, aims to raise awareness of the disease and its consequences for patients and their families, amongst the general public, medical professionals and European institutions.
On Rare Disease Day (27th February), patient associations and representatives from Belgium, France, Germany, Greece, Italy, Romania and Spain came together in the #AllUnitedForMG coalition to announce the creation of European Myasthenia Gravis Day.
What to expect on European Myasthenia Gravis Day
June 2nd is an opportunity to create a moment in time for myasthenia gravis (MG) patients across Europe, to better understand the burden of this disease. By driving this momentum, the coalition shows its determination to strengthen patients’ rights to a better quality of life.
For many MG patients, the care pathway is a source of stress and uncertainty. The lack of recognition of the burden of the disease across Europe creates inequalities in patient care.
That is why the All United for MG coalition is launching an awareness campaign to highlight the strength, courage and resilience of patients suffering from myasthenia gravis.
This campaign, which will launch today (2nd June 2023), aims to give patients and their families and carers a voice by highlighting the impact of this disease on their physical and mental wellbeing.
The coalition is not simply looking for support but also for empathy amongst the general public, for an improvement in the therapeutic approach and how doctors and patients interact with each other.
“Our aim is to enhance patients’ quality of life and reduce their mental burden”, say the founders of the European Myasthenia Gravis Day.
What is myasthenia gravis and its symptoms?
Myasthenia gravis is a serious, rare and chronic neuromuscular autoimmune disease that can cause debilitating and potentially life-threatening muscle weakness. Put simply, the body’s natural defences are not working the way they are supposed to.
Its symptoms often show up in the face first, with drooping eyelids being an early sign. Weakened eye muscles can also lead to double or blurred vision. Smiling, chewing and breathing can also be affected, as well as the arms and legs.
Because MG is rare, some medical professionals are not fully aware of it or its symptoms. Frustratingly, this can often result in misdiagnosis, mismanagement and misunderstanding.
How to get diagnosed with myasthenia gravis?
Diagnosis of MG usually starts if your doctor or optician finds muscle weakness in the eyes and/or drooping eyes. They will then refer you to a specialist who will do more examinations such as blood tests, nerve tests and or scans.
Is there treatment for myasthenia gravis?
There is no cure for MG but there are treatments to keep symptoms under control. These may include:
- Pyridostigmine – tablets that help electrical signals travel between the nerves and muscles.
- Steroids – reduce the activity of your immune system (the body’s natural defence against illness and infection), to stop it attacking the communication system between the nerves and muscles.
- Immunosuppressants – reduce the activity of the immune system, such as azathioprine or mycophenolate.
- Surgery to remove the thymus gland – this procedure has been shown to improve symptoms in some people with an unusually large thymus (a small gland in the chest), although not in people with a thymus that’s grown abnormally (a thymoma).
You can find out more about the symptoms, diagnosis and treatments of myasthenia gravis on the NHS website.
Impact on the quality of life
Living with myasthenia gravis has a massive impact on people’s quality of life, with physical changes that cause weakness and less mobility, mental trauma and losing independents.
Martin Mander who is 51 was diagnosed with MG at the end of last year and offered to share his experience of getting the diagnosis, the symptoms he’s had, initial treatments and the impact it has had on his career and marriage:
“I got diagnosed in November 2022. I started with double vision, headaches and a lack of balance. I was admitted to hospital and spent nine days having numerous tests, MRI, CT and lumbar puncture. After seven days nobody had a clue what I had. Eventually, a certain doctor walked into my room and within five minutes said I have MG. I’d never heard of it. He said to Google the disease that night as it would give me a fair idea of what to expect. I was discharged and set up a monthly meeting with my neurological doctor and the local eye clinic.
The impact of my condition worsened over Christmas. I could not drive and could not see, so tried a patch on one eye. The medication started with mestonin, thiamin and steroids. I started on 10mg of prednisone every other day to get me to a target of 100mg every other day. Having spoken to other MG sufferers, everybody says 100mg is way too much for the body.
The side effects are awful – I have gained 24lbs in weight, my bones and joints are now weak, my memory is completely s***, cannot remember most things now, even from a conversation 10 minutes ago.
But most worrying is the breathlessness. I had a meeting with my neuro doctor in February and was immediately admitted back into hospital on the grounds I was starting to have a crisis. Spent another six days with IVIG (plasma) treatment, which was no good, and various other meds. I came out very very weak.
I am now waiting to see if I can go down the Rutiximab route as I cannot cope with the steroids anymore. I also have mood swings, causing problems between myself and my wife. I have given up work after sick leave for six months and trying to get help with benefits having never claimed a penny in my life – it is a nightmare.
I can honestly say MG is such a difficult subject within the health sector as it is so rare. More needs to be done to help us as the mental side of things is something that is forgotten and is a massive impact on MG. More needs to be done about the awareness of MG and the help provided to us.”
Aside from the symptomatic aspect, MG has a wider societal impact. The unpredictable nature of the disease’s physical manifestations complicates patients’ interactions with others. This can often result in a feeling of embarrassment, increasing the risk of anxiety and depression.
Finally, the burden of the disease makes it difficult to plan their lives, impacting them not only socially but also professionally. Both patients and carers often have to abandon their careers or change their working hours, leading to potential financial problems, as well as isolation, frustration and guilt.
For more information about European Myasthenia Gravis Day and how to get involved, go to https://www.allunitedformg.eu.
Do you, or someone you know, live with myasthenia gravis? How does it affect you and are you pleased to see the disease being recognised in this way? Share your stories in the comments box or on social media and use the hashtag #AllUnitedForMG.
