Rare Disease Patients Have Questions About the COVID-19 Vaccine

Many people have questions about the COVID-19 vaccine, a number of them pertaining to the speed at which it was developed and approved. Rare disease patients are no exceptions. Barbra Sonnen-Hernandez, the founder of the Texas Rare Disease Community, is raising concerns. She lives with Gullian-Barre syndrome, and she is concerned about the effect that the vaccine will have on her condition and other rare diseases.

Concerns About the Vaccine

Many rare disease patients live with a heightened risk of severe cases of COVID-19, whether that is due to compromised immune systems or other symptoms. Because of this risk, a vaccine is of the utmost importance; however, patients have some questions first.

One of the main concerns is in regards to the clinical trials that led to approval; the participants did not have rare diseases. This means that we do not know exactly how the vaccine will impact those living with rare conditions, especially those that compromise the immune system.

Barbara’s Story

It has been nearly ten years since Barbara was diagnosed with Guillian-Barre syndrome (GBS), and she has done a lot of work in the rare disease community since then. She is the founder of the Texas Rare Disease Community and has heard concerns about the vaccine within her organization.

Her own doctor has advised her to avoid the shot, as she has a weakened immune system and nerve damage from GBS. She already abstains from receiving flu shots and other vaccines. Other rare disease patients have voiced similar concerns; they are unsure if it’s safe. They are waiting for a confirmation of safety from their own doctors, as well as the state’s vaccine advisory panel.

Hopefully more research will be done into the safety of this vaccine for rare disease patients, as they are a group that requires more protection from COVID-19. You can read more about Barbara’s story here.

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