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» LymeNet Flash » Questions and Discussion » General Support » COVID ... AND MAST CELL PATIENTS

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Author Topic: COVID ... AND MAST CELL PATIENTS
Lymetoo
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Member # 743

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Written by a Mast Cell patient:

“This is what many Mast Cell Activation Disorder patients face as their day-to-day reality. Systemic upregulation of their innate immune system that results in Covid-19-like symptoms that have been described as a "cytokine storm".

Many of us rely on massive quantities of medicines just to keep us stable enough to keep us out of the hospital. Some of us use epinephrine auto-injection MULTIPLE times per day.

Some of us take a form of chemotherapy used for cancer patients to treat cancer in order for us to suppress our own immune system. Are you tired of the Covid?

Exhausted with the social restrictions placed upon all of us? Imagine if you had no choice and you HAD TO live your life this way. Never being able to go to a restaurant for fear of your food being cross-contaminated with a microscopic amount of some other food that you have an immune reaction to.

Never able to sit close to others out of precaution to not get exposed to a scent from a laundry softener that could trigger a full anaphylactoid event requiring hospitalization.

Not being able to hug your daughter because she goes back to school where, despite all precautions taken, the risks of exposure are increased simply due to the number of students in the building.

This pandemic will pass. Like the 2003-2004 SARs outbreak or the 1918 Influenza, this virus will mutate itself away or slowly become less lethal and less virulent.

Or, science will triumph and a safe and effective vaccine will be created that will protect most of you from the very worst effects of the infection. Business will go back to usual.

I won't be able to take that vaccine because of my MCAD. My life will continue to be as restricted as it is right now.

There are over 30 million Americans living right now with a rare disease diagnosis. Think about that. Thirty. Million. Over 90% of these people have no effective treatment or cure for their disease.

Many of this population will have profoundly negative outcomes if they are exposed to the Covid 19 virus. But we must continue to do the things necessary to live our daily lives. We need groceries.

Many of us still work in some capacity and interact with others on a daily basis. Our risk of daily exposure goes up dramatically when others decide the social restrictions they have suffered for a few months are too onerous to continue to adhere to.

Based upon emerging data, they have a reasonable expectation that IF they are infected, they will probably be asymptomatic or have minor symptoms.

The probabilities are on their side. But the probabilities are not on our side. Our risks of significant illness and death are exponentially higher.

This type of Covid lifestyle is all we know. We don't have the luxury of choice. But you do. You have the choice of having compassion for the suffering of others or not.

You have the choice of minimizing the patient load on our national health care system, or not. You have a choice of minimizing the LONG TERM economic costs associated with disabilities that WILL arise as a result of these infections, or not.

By the way, if you think that won't have an effect on your own financial well being, you do not understand economics. Long term disability costs are SIGNIFICANT burdens that we MUST bear collectively.

This is how we have designed our social order. You can argue the right or wrong of it. But that IS how we have set up our system.

So, for all of the freedom-loving and liberty-minded fellow citizens who do not have a rare disease diagnosis and are not old or in any other demographic that has a significant risk of death or disability from exposure to this virus, you have a choice.

You can choose to muddle through with these inconvenient and restrictive precautions that doctors have finally figured out are the best defense against wide-spread infections for another 6 months or maybe even a year before this pandemic completely fades away or you can ignore the science and your fellow citizens and live your life without the burden of caring about the health and safety of another human being.

It is a choice. Thank GOD that you have the luxury of choice. We do not. Please consider that the next time you go out among us. Thank you.”

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94308 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
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Member # 5960

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Well said! My allergist told me to quarantine in March.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4752 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
   

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