Last week, the news has reached us that a young Duchenne adult from Belgium has been infected with COVID-19. The 29 year old Bert Gooris from Leuven has a relative mild form of Duchenne muscular dystrophy, and was tested positive on March 12. This is a translated excerpt from his diary ‘Mijn Corona-Avontuur‘ first published in Dutch on the website of Duchenne Parent Project Belgium on March 23.
Click here to read the translation of the full COVID-19 diary of DMD patient Bert Gooris in English.
Bert Gooris: My Corona Adventure
“In the first week or March, I felt like I had a cold. I sneeze a lot and have a headache. Because I don’t not feel weak, I don’t think of being possibly affected by the coronavirus. After coughing more, becoming feverish and short of breath, we go see a doctor. He suspects a trachea infection, and prescribes an antibiotic.
After a week of becoming weaker and feeling worse, I go see the doctor again. With a high heart rate and shortness of breath, they send me to the emergency room. There, the doctor is completely wrapped up and they wear a mask and ski goggles. I start to feel afraid about the situation. I can catch a conversation between doctors saying ‘but he’s a Duchenne patient’. Luckily, I immediately get oxygen, a drip with an antibiotic cocktail, blood was taken and they came to take a picture of my lungs.
Then came a doctor saying I have been tested positive on corona, and I have to move to a special quarantine for the next 14 days. This was a difficult time, since my mother had to make the decision to stay or go home, knowing if she’d leave, she couldn’t see or help me for 14 days. Since she knows caring for someone with a muscle disease is different than caring for a corona patient, she decided to stay.
In the next days, I feel relatively well. I’m still nauseous and I feel there is pressure on my lungs. I keep telling myself that to fight the virus, I should eat well. The doctors stopped all medications other than calcort and pantomed for the stomach because my blood pressure was fairly low, although they give me something because I still have fever. After an air stacking session, I feel much better.
On Saturday, I feel a bit worse. Airstacking helps feeling me better. My mother can bring me some medications and a clean set of clothes. Next Monday, the head doctor tells me I have to go to the intensive care, and hear my mother is not allowed to visit me there. I get nervous and my heart rate goes up. Luckily I have nice nurses who help me with medication and making sandwiches. When I ring to adjust my bed, I got told for the first time ‘Don’t ring that much, there are other patients as well’.
During lunch on Tuesday, I turned the oxygen flow off myself. After eating I kept it off, and together with the nurse and doctor we decided it was not needed anymore. Because everything looks fairly well, we start preparing for returning home.
Upon returning home
Last Wednesday, I could go home, although I have to spend an additional 2 weeks in quarantine. Currently I’m separated from my father, who is also showing symptoms of COVID-19. Luckily, I have my own apartment, so it’s relatively easy for me to stay quarantined. I can do some work in front of the computer. However, I often have a dry mouth and I need to get my breathing back under control. Funnily, some things taste not the same as before.”
Currently, there is no evidence that people affected by Duchenne or Becker muscular dystrophy have a higher risk on catching the virus. Proper hand washing with soap and social distancing by the person affected and their carers are the best ways to minimise chances of infection. World Duchenne Organization hosted a series of webinars to explain what we know and how to minimise chances of infection, and what you can do when you get infected in terms of medicines and possible treatments.
To stay up to date on COVID-19 developments in relation to Duchenne and Becker, WDO has created a Live Feed that is updated regularly. Always consult your doctor or clinician before making any changes in your care or medication regimen.