Myasthenia gravis is a chronic auto-immune condition that causes muscle fatigue. It is often referred to as the ‘snowflake’ condition since every person who has myasthenia gravis can experience slightly different symptoms, which complicates treating affected individuals even further.
Symptoms of myasthenia gravis include double vision, a nasal voice, problems with swallowing, difficulty making facial expressions, muscle fatigue in general (.i.e. tiredness in arms and legs), and in severe cases: difficulties with breathing. With My Awareness month approaching in May and the distressing concerns for those with myasthenia regarding the news of corona that is engulfing the media currently, I have decided to dedicate this article to the disorder that has changed my life. I first started noticing double vision 2 years ago, halfway through my penultimate year in secondary school. I took an eye test and was told there was nothing noticeably wrong and so, assuming it was merely tiredness, I shrugged it off. However, not only did these symptoms persist but as time went on, they exacerbated rapidly. By the summer, I was practically muted by the nasal tone of my voice which, by this stage, had become incomprehensible. I could not swallow food nor drink, my eyelids were drooping to the point where I needed assistance from an eyepatch, I was struggling to move my arms, experiencing respiratory problems and was, for the most part, chained to my bed for months.
What was most distressing about all of this however, was the fact that no one knew what was wrong with me. I was being given various treatments, and even underwent a surgery, but nothing seemed to work. It felt as though I was simply being batted back and forth between doctors until someone finally stumbled upon a solution.
After at least three months of experiencing persistent symptoms, it was finally suggested that I may have myasthenia gravis. I took the test, although as soon as I asked what I was being tested for I was certain that they had finally found the answer I had been craving for so long, and it came back positive. I felt as though a huge light had been shone on the darkness and confusion that had been consuming my life for so long now.
Contrary to the expectation that being told you have a chronic disease would have no silver lining, I felt somewhat relieved that after all this time, I at least knew what was wrong with me. Even on uncovering my mystery diagnosis, I was still riddled with questions. It was something I knew so little about, and it still seems from my regular hospital appointments and consultations that it is a disease with limited understanding.
By raising awareness for rare diseases such as these however, diagnosis times can be sped up and friends and families may be able to offer more understanding and support. From experience, I know that quick diagnosis times are key to ensure that those affected by the condition start their new journey feeling as secure as possible. There is no cure for myasthenia gravis, which makes creating a strong support network for those affected even more vital. Since diagnosis, I have had multiple treatments: several MRI’s, IVIG’s, a plasmapheresis, thymus surgery, more blood tests than I can count on one hand and have been put on lifelong medication. All of which has been, to be perfectly honest, very mentally and physically draining. Myasthenia is one of many invisible illnesses, since from an outsider’s glance, it is not glaringly obvious. This, however, does not make it any less real or challenging for those affected. The demands are still as burdensome as ever and seem to act as a constant nagging in the back of your brain. Because of this, having a disease such as myasthenia can be particularly isolating. It feels as though no one quite understands. And so, since Myasthenia Gravis awareness month is steadily approaching, I wanted to take this opportunity to share a snippet of my own journey and hopefully contribute towards the efforts of sharing our understanding and awareness of this condition in a hope to improve future treatments and care for all those who are affected. By Zoe Wreford
