Every one of us has felt the impact of COVID-19 in some way, be it through first-hand infection, losing jobs and family members, or simply having to sacrifice in-person interactions.
For Kayleigh Chapman (23), however, this pandemic has impacted her in a very rare and life-changing way.
Kayleigh, who prides herself on her quirky ability to impersonate Donald Duck, spends her free time singing and drawing. She was studying to become a nurse before her life, like ours, unexpectedly changed in 2020.
When Kayleigh tested positive for COVID-19 along with her parents on the 2nd July 2020, the shortness of breath, high temperature and fatigue were symptoms she shared with the majority of other infected people. In August, however, following a month of severe symptoms, Kayleigh was hospitalised for covid-related complications.
A neurologist “pushed against my forehead, and she saw that my neck muscles were weak,’ said Kayleigh.
After a few days in the hospital, Kayleigh was put on trial-medication and two days later, when the neurologist pushed her head back again, her muscles were stronger. Kayleigh was then diagnosed with Myasthenia gravis (MG), a neuromuscular disorder that causes weakness in body muscles used for movement.
MG occurs when communication between nerve cells and muscles becomes impaired. For Kayleigh, severe muscle weakness, breathlessness, and impaired speech accompanied her symptoms. If not monitored, the signs lead to Myasthenic Crisis which can cause respiratory failure and the need for ventilation.
“Covid caused my oxygen levels to drop to 56%, which is why I was then hospitalised, and it caused me to have muscle weakness which is then why I got my MG diagnosis”, explained Kayleigh.
She also said that the doctors are unsure if she had this disease before getting Covid. Still, the extreme oxygen loss during her illness was a catalyst for the onset of MG.
Not surprisingly, feelings of loneliness, shock and surprise accompanied Kayleigh following her diagnosis, which she shares with just 1/10 000 people. The same day of her diagnosis, however, Kayleigh was put in contact with a support group dedicated to helping and encouraging people with rare diseases.
After being told about Rare Disease South Africa and getting in contact with an ambassador, Kayleigh found a community of people going through the same as she was. According to their website, this group started in 2013 is a ‘non-profit organisation that has been successfully working to ensure that people living with rare diseases and congenital disorders experience better recognition and support, improved health service and a better life overall’.
Kayleigh is part of a WhatsApp group of people with MG, all of whom support each other. “The people are very supportive and they gave me advice for medical aids that could help pay for the medication as the one tablet costs R1400. The group also offers counselling which I have been going to for about 12 weeks to help me cope,” said Kayleigh.
While this group has helped Kayleigh to cope with this rare disease and has given her a sense of belonging and understanding, Kayleigh constantly has to monitor her physical well-being. She avoids doing strenuous activities that make her muscles weak and has to monitor her oxygen continuously. She also goes for monthly check-ups.
This uncommon, unexpected disease resulted in the need for permanent medication, which caused “my face [to puff] up to double the size, I gained weight, my hair started to fall out.”
She elaborated on the side-effects of the medication, explaining that “My skin was almost translucent because I was so pale. It definitely made me really depressed. It also caused my heart to go as high as 253 beats per minute which caused me to go to the ER. There were SO many side effects.”
When asking if she considers this disease manageable, Kayleigh said that “I just mustn’t get sick because I could end up in ICU for something as small as the flu”. True to her fighting spirit and perseverance, Kayleigh intends to apply for nursing school again in 2022.
Thank you, Kayleigh, for being the embodiment of bravery in sharing your story. To everyone else, be careful. No one knows how Covid will affect them, and it will affect the healthy 23-year-old and frail 97-year-old alike.
Kathryn van den Berg
When trying to come up with an alias for my blog, I turned to words people have used to describe me for inspiration. The term 'control freak' popped up in my mind, but I'm not that confrontational and opinionated (anymore...). And so came into existence a happy compromise between my A-type personality and sense of humour.
Kathryn is The Control Enthusiast.