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Preparing for a Hospital Admission with Rare Disease during COVID-19 Pandemic

covid-19 preparation rare care rare disease patient

The situation in our hospitals is getting more chaotic so managing and advocating for rare disease care is even more challenging. A hospital is a challenging place for a rare disease patient at any time but the 'no visitor' rule has complicated communication and the ability for a loved one to help advocate for your care.

To be clear, the doctors, nurses, and all medical personnel are totally committed to providing the best care that they can during this crisis but the need for PPE while interacting with patients, the sheer number of critically ill patients and the lack of visitors significantly impacts what each of them is able to do.

As rare disease patients, we don't want to add to the stress or burden that they are dealing with but we still need accommodations like avoiding specific medications, treatments or careful monitoring for serious reactions or symptoms.

It is critical for our medical personnel to limit their exposure to COVID-19...

3 Ways for Rare Disease Patients to Prepare for Coronavirus

covid-19 preparation rare care rare disease patient

Depending on where you live, how much you follow the news and your general personality type, you may or may not be concerned about COVID-19. Panicking doesn't help anyone but being prepared may help and certainly won't hurt.

There are a lot of general recommendations out there but here are several specific ways that you can prepare as a rare disease patient.

1. Get extra prescription and OTC meds to have on hand.

There is the potential for drug shortages based on the amount of medication we import that gets produced in India with ingredients coming from China. As reported in The Wall Street Journal If Coronavirus-Stricken China Can’t Export Medicine, the World Is in Trouble, "China is the source of a large percentage of basic drug ingredients." Most drug manufacturers keep a 2-3 month supply on hand so hopefully, the Chinese factories will be back online before it becomes a big issue. But, given that rare...

Preparing for a Hospital Admission with Rare Disease during COVID-19 Pandemic

3 Ways for Rare Disease Patients to Prepare for Coronavirus

1. Get extra prescription and OTC meds to have on hand.

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