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Where to Find Resources on COVID-19 and Your Rare Disease

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If you have a rare disease, the COVID-19 pandemic can come with extra risks and challenges. From immunosuppressant medications, getting in touch with specialists and different pharmacies, as well as information overload, it can be overwhelming. When I read the news, most of the guidance aimed at the public is so general; I wonder when it applies to me and when it’s not enough to stay safe.

It’s too early to tell how the coronavirus (COVID-19) can affect people with rare disease, but you can stay informed with resources that speak to your needs as someone who is rare. Here are some strategies I’ve found helpful for keeping up-to-date:

Find Rare Disease Support and Resources

Organizations like NORD (National Organization for Rare Disorders) are doing a fantastic job of bringing together resources for the rare community on COVID-19. They relay advice from rare disease experts and have opened a critical relief program for rare patients affected by COVID-19.

If you’re not already involved, now is a great time to find the patient advocacy group associated with your condition. NORD has a list of most of these, but you can also find them by searching for the name of your condition and “patient support.” Scroll down past the ads in the search results.

Explore these webpages and sign up for newsletters for Q&A’s and webinars with doctors who specialize in your condition. This is probably the closest we have right now to a straight answer on how COVID-19 interacts with different rare diseases.

Check the Manufacturer Websites of Medications You are Taking

I went to the websites of companies that make the drugs most commonly used to treat my disease. All of them now have a COVID-19 response page. What I found was very useful: information on how they will deal with supply shortages, what to do if you run out of supplies that may be disappearing because of panic-buying (like alcohol wipes) and related research.

Some manufacturers are also offering relief programs like free temporary supplies of certain medications, in case refills are hard to come by. Others are offering extended fill co-pay card support. Companies that offer free medications through a grant are relaxing the requirements to apply, so more people can access medication if they have lost their insurance or job.

Questions for Your Doctor

The CDC is recommending people in at-risk categories secure a 30 day supply of medication in case a community outbreak of COVID-19 makes them unable to safely leave their homes. Vaccines for influenza and pneumococcal disease should also be up-to-date. It’s not a bad idea for rare patients to ask their doctors about more refills for a supply of medication at home either, regardless of whether they officially fall in an at-risk category.

Another question to ask is how the risks of infection from visiting a medical facility might outweigh the benefits of your normal monitoring plan. There may be a need to adjust the frequency or circumstances of monitoring, or there might be the option to switch to a less crowded facility (for example, having bloodwork done at the cancer center lab instead of the main hospital lab).

Look at the News With a Critical Eye

In the past week, many media outlets have reported a disturbing trend of COVID-19 patients turning up with damage to multiple organ systems and strange events like stroke in young people. Doctors and researchers are still studying what this means. We won’t really know for a while. Case studies written by doctors describing what is happening to patients in hospitals are on a fast-track to publication right now, because doctors need this information as quickly as possible. Many are less than a month old.

This can be confusing if you’re rare and see information related to symptoms you have experienced crop up in studies of COVID-19. It is also scary when the medications you need to live have side effects that overlap with COVID-19 symptoms.

I found a case study today associating thrombocytopenia (a bleeding disorder where the immune system destroys platelets, the cells needed to form blood clots) with severe illness and death that made the hair on my neck stand straight up. On closer reading, I realized it had nothing to do with me. Lots of people get short-term, mild thrombocytopenia as an immune response when they’re very ill, so it makes sense that COVID-19 patients would, too.

Not knowing how the pandemic can affect you if it reaches your household is frustrating and anxiety-producing. It makes you feel powerless. The economic toll doesn’t help. On the other hand, having to sort through the internet storm of news to find the information that really matters to me has made me a more educated and confident patient.

For more on the coronavirus, check out the following stories from our community:

Getty image by nortonrsx

Originally published: April 30, 2020
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