Share your Rare: Krystel El Koussa
I was twenty-six years old, a filmmaker, leading a totally normal and healthy life, until I was diagnosed with myasthenia gravis. My name is Krystel El Koussa, and this is my story.
HOW IT STARTED
Around August 2022, every day I started feeling unusual, extreme fatigue, which was weird for me because I was a very active person. At first, I thought it was just stress. 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. Imagine not being able to even hold a 5 lbs dumbbell at the gym!
Since these were literally INVISIBLE symptoms, the first doctor I visited was a general practitioner, who ordered blood tests. When they came back to normal, she said it must be stress. I tried taking care of my muscle weakness by myself: eating more proteins, exercising every day, and fixing my sleeping routine. It’s what you do when you think you’re just stressed, right?
But I could feel something was wrong with my body. Before I knew it, I couldn’t swallow properly, couldn’t smile! My speech would start to get slurred when I was out with my friends. Social awkwardness much? I started falling out of nowhere without being able to get up. It was terrifying, nothing like you could ever imagine.
DIAGNOSIS AND TREATMENT
It wasn’t until December 5th, 2022, after giving up on the possibility of general practitioners figuring out what was wrong with me (and four trips to the ER), that I was officially diagnosed with MG. The doctors said I was in mid-crisis because my breathing got harder. Consequently, they moved me directly to ICU where I started my first IVIG treatment.
As a precaution, and just like any MG patient, a chest CT scan was done. It turned out that I had a Thymoma, which is a tumor often associated with MG that can cause symptoms to worsen. It needed to be removed. This tumor can sometimes be benign, which was what I was hoping to hear.
After finishing the IVIG treatment, my symptoms did not completely disappear, so I was administered plasmapheresis (also known as apheresis, plasma exchange, or “plex”) while still in the ICU. I spent Christmas in the operating room, undergoing open-chest surgery to remove the tumor. It was the hardest and most painful thing I’ve ever been through. To say the month of December was traumatizing for me is an understatement.
HOW IT’S GOING
After being released from the hospital, the biopsy results came back informing me that the tumor was cancerous. I was shocked. Being diagnosed with a chronic autoimmune disease AND cancer at the same time is not easy to grasp. Radiation therapy was recommended; however, due to my young age and the fact that the side effects would outweigh the benefits, the medical team and I decided not to do it for now. I would be going in for frequent scans to check for cancer recurrence.
I am now six months post-op, still doing physiotherapy sessions for rehabilitation. My muscles became very deconditioned due to this tough surgery, after which I also suffered a pulmonary embolism. With the help of my physiotherapist and the MG medication I take to control my symptoms, I am working on regaining my muscle strength.
LIVING WITH MG
It is definitely not easy living with any chronic illness, let alone myasthenia gravis, the snowflake disease.
Every day is different. One day there are fewer symptoms, the next day a lot of symptoms, and some days no symptoms at all! You never know, you just have to live day by day. I learned to be patient with myself and with my body.
Being newly diagnosed, I’m slowly finding a new rhythm in my life while still recovering from the surgery and other complications I had. Many of the medications that I’m taking have intense side effects that also require monitoring.
The most important part of my recovery, I would say, is taking care of my mental health. Being strong enough to handle the lows and realizing that some days might not be as good as others, but still having the motivation and hope that we, chronic illness warriors, can still lead relatively normal lives. We just need to be patient and understanding with our bodies and supportive of one another.
I invite you to follow my recovery journey and my new life as a cancer survivor living with MG on Instagram at @krystel.k.
