Let’s Work Together to Stay Safe During the Coronavirus Crisis

Megan Hunter avatar

by Megan Hunter |

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Last week, we had the first COVID-19 diagnosis in South Africa, and everyone immediately dashed to their panic stations. People flocked to pharmacies to buy all of the masks, hand sanitizers, and hand soap they could find. Stores are now sold out of these items across the country, and this is after we sent 800,000 masks to Italy.

The reaction has been hysteria and panic buying. I saw one online store selling a box of 50 masks for R2,000 ($128) when they were available for just R75 ($5) the previous week. Even dust masks have sold out! We have a national shortage of masks for healthcare professionals, hospitals, and the immunocompromised who need them on a daily basis, never mind when the threat of COVID-19 hits.

Many news articles have tried to calm everyone down, but they’ve proven ineffective, as we are constantly bombarded with images of people around the world taking extreme measures to protect themselves from the virus — including someone who appears to have placed a large water bottle over their head.

I have seen pictures of people with their shopping carts piled high with alcohol cleansers, alcohol swabs, and sanitizers. There aren’t enough of these products to go around, so those who really need them — particularly low-income households and immunocompromised families — have no options.

A friend’s son has Pompe disease. She is worried because her son is due for his next infusion but she can’t find masks, gloves, or sanitizer anywhere. They need these supplies to safely infuse due to the high risk of port-a-cath infections. The World Health Organization has said that normal surgical masks are ineffective at preventing COVID-19 when used alone. They must also be combined with hand hygiene. The WHO also recommends that masks be used only by healthcare professionals and people who were exposed to the virus or are symptomatic.

While a calm attitude is good for society during crisis, I was upset by a column I read arguing that people shouldn’t panic because “[c]oronavirus is somewhat (slightly) accelerating the death of people who are near death; if you keep healthy the odds strongly suggest you will be just fine.”

That’s great for those who are healthy, but what about those of us who are immunocompromised with a rare condition such as myasthenia gravis? Or patients who have recently undergone a round of chemotherapy? Is it OK for them to get COVID-19 simply because they are closer to death? How could someone think this comment could pass as morally acceptable?

Please, if you are healthy and strong, help to ensure that preventive supplies are available for those of us who are harmed most by sickness. COVID-19 can kill many of us. Saying that the virus simply “accelerates” death for the chronically ill and elderly isn’t exactly comforting.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Jim Smithson avatar

Jim Smithson

I have had MG for about 10 months and currently taking 25mg of Prednisone, 2-60mg Mestinon and have been taking 2000 mg Cellcept for 12 weeks-a little affect. I was thinking of getting off the Cellcept to help my immune system in case I caught the Virus. Does that make sense?? THANKS

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Joan Medi avatar

Joan Medi

I was diagnosed 2 yrs ago. I had two bad episodes a year apart. Have taken Cellcept, gammagard infusions, Imuran and Mestinon. Nothing has worked. I started talking Soliris infusions and thanks to God, it’s working. My energy level has increased tremendously. Sometimes I take one Mestinon pill as neede if I do too much through out the day. Please give it a try. It’s helping me greatly it should workout for you as well. Wishing well for all

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KRISTIN avatar

KRISTIN

I have pompe disease and I participate in a study to help determine the efficacy of next gen infusion treatment out here in the U.S. I have a lot of support. If your friends son needs an ally or masks please contact me.

Reply
Svetlana avatar

Svetlana

I have MG since 5 years now and I only take 3 (20mg) Mestinon per day ans it works.
Seek advice to your doctor to know if you can do so.

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Terrie Vidman avatar

Terrie Vidman

I take 2000 mg of cellcept a day. Should I go to restaurants

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Joseph Phillips avatar

Joseph Phillips

One very common misconception seems to be that if you are immuno-compromised, you are more likely to be what my supervisor at work (a medical education professional, no less!) styled as "a disease vector" for COVID-19. Correct me if I'm wrong, please, but am I not JUST AS LIKELY as anyone else to be exposed and carry that exposure, not MORE -- and more likely to be a victim, not a vector, of this pandemic? The assumption that I put others at greater risk seems very onerous to me -- akin to the "you're nearer to death" argument, which I find morally reprehensible.

Reply
KRISTIN avatar

KRISTIN

I have pompe disease and I participate in a study to help determine the efficacy of next gen infusion treatment out here in the U.S. I have a lot of support. If your friends son needs an ally or masks please contact me.

Reply
Bill Powell avatar

Bill Powell

I'm new to the diagnosis of MG, and double-seronegative. I'm only on Mestinon - lots (8 60mg tablets a day) but no immunosuppressive therapy. Is there any immunosuppression associated with MG alone. I think the danger of COVID19 is MYASTHENIC CRISIS. Weak ventilatory muscles and lungs full of junk is a scary combination. My wife has RA, Sjogren's syndrome and a rare cancer, but through with chemo on March 13. We have reason for some fear.

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