COVID-19 Guidance Often Neglects People With Rare Diseases

As someone who lives with vasculitis, I was afraid of how my body would react to the virus.

Under my rheumatologists guidance, I needed to take an abundance of caution when it came to COVID-19.

Vasculitisis a rare condition that involvesinflammationof the blood vessels.

I had not received a solid organ transplant, and my medications were not immunosuppressiveenough.

But not everyone has a rare disease with advocacy groups pushing for change at a state-wide level.

The way some chronic illnesses impact someones body makes them high risk for getting COVID-19.

But many of these conditions werent prioritized during vaccine allocation.

But these recommendations take time to take effect at the state level.

In this case, a physicians order reflecting current ACIP recommendations could be helpful.

Who Qualifies for a Additional COVID-19 Shots?

More research on rare diseases is incredibly crucial.

I often wonder if an earlier diagnosis would have led to my vasculitis symptoms being more controlled today.

NORD has aCOVID-19 Resource Centerfor people who live with rare diseases and their loved ones.

For the most recent updates on COVID-19, visit ourcoronavirus news page.

Centers for Disease Control and Prevention.COVID-19 vaccines for moderately or severely immunocompromised people.

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doi:10.1016/s2665-9913(21)00316-7

National Organization for Rare Disorders.Idiopathic pulmonary fibrosis.

Johns Hopkins Medicine.Booster shots, third doses and additional doses for COVID-19 vaccines what you better know.