Managing a Rare Disease During the Covid-19 Pandemic

— Categories: Ependymoma Community     Posted on January 12, 2022

Hearing the phrase, “you have cancer” is terrifying. Learning that you have a rare type of cancer makes it even more daunting. Doing those things while a global pandemic is occurring complicates it all, which only adds to the pressure of the moment.

People don’t choose to have an ependymoma, nor did anyone ask for the Covid-19 virus to enter our lives, but such is the world we currently live in. The reality of the situation is that newly diagnosed patients have additional factors that make a difficult situation even harder.

Thankfully, there are two strategies that address both concerns. Rather than confronting Covid complications or trying to account for the rarity of ependymomas, it’s possible to address both things concurrently. In my opinion, the two best ways to manage additional things complicating the diagnosis are:

1. Seek care with an experienced provider

2. Use a facility that knows how to handle the added layers



When dealing with a rare disease like ependymoma, it is absolutely crucial to involve a doctor who has experience treating the disease. Ependymomas only account for 1.9% of all primary brain and CNS tumors* - that makes the diagnosis analogous to winning the lottery twice! Jokes aside, primary brain or CNS tumors are not seen frequently by many doctors, and the chances of an oncologist having had a patient with an ependymoma are low.

For many reasons proper treatment of the disease from the outset of the care continuum is critical. The brain and spine are often likened to high-priced real estate, and the need for experience with something that valuable is obvious. 

When hearing an ependymoma diagnosis, one of the first questions from a patient needs to be about whether the provider has any experience treating the disease. If a doctor has no history with ependymoma, a second opinion is warranted…actually, a 2nd opinion is always warranted, but that’s another article. 

If a patient is unsure of how to locate a provider experienced in treating ependymoma, they need to look no further than the CERN Foundation website. Before treatment outcomes can be discussed, specific diagnostic scans and testing, as well as knowing what treatments are available need to take place. Without having experience with ependymoma, those aspects are done on a broader scale instead of specifically and accurately.

Now, take all the mentions of “ependymoma” in the 4 paragraphs above, and replace it with Covid-19 - the same things are true about a provider’s experience with the coronavirus. The complications to treatment and care stemming from the pandemic only make it more important that a provider has suitable experience.



Not unlike the need to use a provider with the necessary experience, finding a facility appropriate to the situation is paramount. Being able to have testing, consultations, treatment, and follow-up care all at the same facility is a way to eliminate one of the many stresses of the situation. The best way to ensure that all phases of care are done at the same place is to find a facility with prior experience with ependymoma.

With only 1,340 ependymomas being diagnosed per year*, most facilities have no history with the disease. Neurological specialists in oncology, surgery, radiology, and pathology should all be included in a patient’s care plan, and those specialists are often found on a hospital’s tumor board. But it’s important to note the difference in “having” those specialists versus having ones with knowledge and experience in ependymoma.

A facility with experience in handling rare disease cases is going to be well-equipped in how to combat the complication of adding Covid-19 to it. Navigating the complexities of the coronavirus and it’s variants is best done by a medical team who has experience dealing with difficult and rare cases. Adding the layers of having a rare disease further complicates the situation, making the need for experience even greater. At a suitably capable facility, even someone uninvolved in actively administering care, like a patient representative, should have the knowledge and experience needed to orchestrate all facets of a case with added layers of complexity. 

Again, CERN Foundation’s website has a list of research centers that can simplify the search for an appropriate facility as well as information on where to start when looking for a second opinion that includes Founding CERN Centers and popular brain tumor consortiums. 




For me, one of the most difficult parts of Covid and isolation has been the temptation to use the internet as a medical resource more frequently than I might have before. “Dr. Google” is always available without an appointment. All the statistics and information was never farther than a browser click away, but it seemed more readily available during isolation because I had more idle time. But, my neuro-oncologist reinforced early-on that the internet is a difficult place to find reliable, scientific-based information. This is especially true when adding the rarity of ependymomas to the equation. The fact is that most things on the internet are too generalized or not at all pertinent to ependymoma. 

In dealing with a rare disease during Covid-19, it’s worth taking the time to identify whether providers or facilities have the knowledge and experience needed. A patient’s outcome is determined by many factors, so it is appropriate to stack as many of them as possible in your favor. It is also so important to take care of yourself and establish good habits while spending more time at home. 

All statistics included in this article are from CERN Foundation’s website (

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