I thought I was stressed — then I became too weak to smile
'I knew there was something wrong with my body.'
A woman was diagnosed with a rare autoimmune disease that made her too weak to smile.
Krystel El Koussa, 27, was told she was stressed when she first started experiencing extreme fatigue and muscle weakness in August 2022.
‘Every day I started feeling unusual, extreme fatigue, which was weird for me because I was a very active person,’ the writer and filmmaker, from Montreal, Canada, said.
‘Weeks later, fatigue turned into weakness in my limbs and fingers. I couldn’t hold a cup, couldn’t tie my hair.
‘By the end of the day, I couldn’t even type an e-mail. Normal daily tasks became almost impossible.’
Despite multiple tests and scans, doctors couldn’t find a cause for her condition. She was told to rest, eat well and exercise.
But Krystel said she knew something was wrong with her body.
‘Before I knew it, I couldn’t swallow properly, couldn’t smile!’ she said.
‘My speech would start to get slurred when I was out with my friends. I started falling out of nowhere without being able to get up.
‘It was terrifying, nothing like you could ever imagine!’
In December last year, she went to the emergency room for the fourth time because she was struggling to breath. She was immediately sent to the ICU and diagnosed with myasthenia gravis (MG) — a rare long-term autoimmune disease that causes extreme muscle weakness which worsen when tired.
What is myasthenia gravis?
MG is a rare autoimmune disease that most commonly affects the muscles that control the eyes and eyelids, facial expressions, chewing, swallowing and speaking.
According to the NHS website, MG is caused by a problem with the signals sent between the nerves and the muscles.
‘In myasthenia gravis, the immune system damages the communication system between the nerves and muscles, making the muscles weak and easily tired,’ the website reads.
‘It’s not clear why this happens, but it’s been linked to issues with the thymus gland (a gland in the chest that’s part of the immune system).
‘Many people with myasthenia gravis have a thymus gland that’s larger than normal. Around 1 in 10 people have an abnormal growth of the thymus called a thymoma.’
To help treat her condition, Krystel was given an IVIG treatment, known as intravenous immunoglobulin, a procedure where healthy antibodies are injected into the patient.
She said: ‘After finishing the IVIG treatment, my symptoms did not completely disappear, so I was administered plasmapheresis [removal of unhealthy blood and/or reintroduction of clean plasma] while still being in the ICU.
‘I spent Christmas in the operating room, undergoing open-chest surgery to remove the tumour.
‘It was the hardest and most painful thing I’ve ever been through.’
As a precaution, a chest CT scan was performed, with doctors discovering a thymoma, a malignant tumour, which turned out to be cancerous.
‘I was shocked,’ she said.
‘Being diagnosed with a chronic autoimmune disease AND cancer at the same time is not easy to grasp.’
Symptoms of myasthenia gravis
- droopy eyelids
- double vision
- difficulty making facial expressions
- problems chewing and difficulty swallowing
- slurred speech
- weak arms, legs or neck
- shortness of breath and occasionally serious breathing difficulties
Now, 10 months post-op, she is still undergoing physiotherapy sessions, to rehabilitate her after her thoracic surgery.
Krystel, who now shares advice to people suffering from chronic diseases on Instagram, said she ‘misses everything about [her] old life, but is learning to be patient with herself and her body.
‘Going through all of this made me eager to live life even more than I used to before,’ she said.
‘Being newly diagnosed, I’m slowly finding a new rhythm in my life while still recovering from the surgery and other complications I had.
‘I have a lot of other friends’ groups who were very understanding when I skipped a lot of outings and just patiently waited for me to be ready to go out again.
‘To these friends, I say thank you for being the people I needed by my side.’
For those suffering from chronic illnesses, she emphasised the importance of living your life to the fullest.
‘I know it’s hard to accept this harsh reality but our lives are not over,’ she said.
‘We are not defined by our chronic illnesses. We are so much more than that.’
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