So the entire world is going absolutely nuts with COVID-19, corona virus, Wuhan flu or what ever you want to call it. Store shelves are void of toilet paper and water. People are fighting over ground hamburger at the stores. It is a nightmare in the making. Some are on the denier side and some would rather lock themselves and family up and not come out until everything blows over.
So what does that mean for those of us with a myleoproliferative neoplasm (MPN)? In short it really depends on your current situation, the medication you are on and so much more. But more importantly from my research, nobody really knows for sure.
Below are just a few of the places I have found where MPNs and COVID-19 are being talked about together.
MPN Research Foundation – COVID-19
The MPN Research Foundation has a post from Feb 28th, 2020 that warns of people on interferon but basically states that you need to follow your doctor’s orders. http://www.mpnresearchfoundation.org/Corona-virus-and-Interferon
Another post by MPN Research Foundation details some more information and advise for those with MPns. http://www.mpnresearchfoundation.org/COVID19. Again pretty much saying we dont know if we are more susceptible. ” We don’t know yet, so it is best to show appropriate caution and follow guidelines from the CDC and WHO about hygiene and avoiding large gatherings. “
In one portion they state
However, if we take the flu (which is also a viral infection) as an example, I have only known a few MF patients ever have
the flu severe enough to be hospitalized and only one that I can think of that has passed from it. I have known no ET or PV patients who have ever needed to be hospitalized from the flu. Thus, it stands to reason that most patients will be okay.http://www.mpnresearchfoundation.org/COVID19
On that same page mentioned above they have a large list of Credible Sources of information for MPN patients.
Dr. Ruben Mesa
Dr. Ruben Mesa discusses and offers guidance to MPN patients on a video below. Basically he states that “Patients with MPNs are not necessarily more prone to infections such as cold, flus or the corona virus than the general population.”
He continues to outline basic hygiene and states that if you begin to feel sick talk to your healthcare provider. However around the 2:28 mark on the video he does state that some patients with MPNs may be more susceptible to COVID-19. Those with low blood counts, bone marrow transplants, severe myleofibrosis or acute leukemia, he suggests avoiding highly populated or crowded areas.
MPN Voice and COVID-19.
MPN Voice is based out of the UK, they are also talking about MPNs and COVID-19 here, https://www.mpnvoice.org.uk/about-us/news/coronavirus-covid-19-advice-for-people-with-mpns.
They of course advise to follow NHS advice and more advise from the UK gov websites. For the people in the USA you may want to take a look ate the COVID-19 pages at the CDC. For the most part they advise to follow what the disease control and government are saying.
However they do state that we do see a small increase in minor infections in people with MPNs. But the higher risk would be to those taking Ruxolitnib or Jakafi. The reason is that Jakafi is a more powerful immunosupressant. Above all they urge patients not to stop taking their medications and to call their care team.
What does this mean for my family and myself.
First reaction personally, since I have already been informed that my immune system is weak is “oh shit here we go.” I have an email into my doc to find if there are more precautions we need to take and will update when I hear back.
The reality of it is we were already being pretty careful since we knew that the medication would lower my immune system. This COVID-19 outbreak just makes us be a little more careful.
I do work with the public every day and don’t have a choice to stop and work from home. That is just not in the cards. I have stopped shaking peoples hands. I get some odd looks but I try to just use the “I have grease on my hands” thing. Some are just stubborn and still want to shake hands, what can I say, farmers are old school. I am still trying to figure out how to tell people that I wont touch them. I don’t want to outright tell people about my condition. Nor do I want to offend anyone.
I have considered wearing a mask but have not gotten to that point yet. Mainly because people may freak out. I am considering having shirts made that say “I don’t have corona virus, I just don’t want it”.
Shaylee’s Activities limited
Shaylee’s school has already cancelled all sports and all group events as of Friday. She got to participate in her first and last track meet on Thursday. They just confirmed that they are closing schools for two weeks. They will be doing online learning and may be closed longer. More details to come.
Her dance studio was still meeting daily and trying to participate in a competition this weekend. The competition company cancelled however. Then because that competition was cancelled, they tried to sign up for another one. I asked Alicia why they are not asking for input from the parents. I know we are not the only higher risk family participating at the dance studio. But in the end I think one of the other higher risk families prevailed and the competition was cancelled.
Since then the regular schools closed, the dance school sent out a survey as to whether people will be attending dance class during the school shut down. We left it up to Shaylee and she opted to wait the two weeks and see where we are before going back to dance.
So what should people with PV, ET, MF, MPNs do with COVID-19?
The same as everyone else for the most part, wash your hands, don’t share drinks or food (that’s just gross anyway). You should probably reach out to your doctor especially if you are on drugs that compromise your immune system and ask.
Above all PLEASE for the love of GOD or what ever deity you believe in, do not go crazy with the panic buying of toilet paper, water, and food. You are only causing more issues. We actually had to go grocery shopping Saturday morning but we went at 5am to avoid the craziness. The online order pickers were running around like crazy. We decided to walk around and see what they were out of.
There was no TP, sugar, flour, or cleaning supplies. Two things that were actually on our list were baby wipes and diapers. Baby wipes were gone in both the cosmetic section and baby section. We just happened to snag the last box of diapers in Rhylan’s size and it was the last box. The only other diapers left were pull ups. A shipment of bread and milk had arrived just as we got there, so I can have my sandwiches at lunch.
Please don’t add to the hysteria, just go buy what you actually need.