COVID-19 and LGS

Since March of 2020, the United States has faced unprecedented public health challenges during the COVID-19 pandemic.

Tragically, this virus has claimed many lives in the U.S. and beyond. Vaccines from several pharmaceutical companies have been recently developed, evaluated for safety and effectiveness, and granted emergency use authorization by the FDA for rapid deployment across the U.S. The vaccines confer >90% effectiveness against SARS-CoV2 (the virus that causes COVID-19) and are largely viewed by experts as safe for individuals over the age of 12. Here are some frequently asked questions about these vaccines:

Can I Contract COVID-19 from the Vaccine?

No, both the Pfizer and Moderna vaccines are not live vaccines. Both use a messenger RNA (mRNA) technology to induce immunity, so it is not possible to acquire COVID-19 infection from either of these vaccines.

What About Side Effects of COVID-19 Vaccines?

The COVID-19 vaccines are associated with some mild-moderate side effects. For example, some individuals will experience only pain at the site of the injection, while others may experience fever, chills, malaise, or headaches. These symptoms typically last approximately 24 hours and stop spontaneously. You can take over-the-counter medications such as acetaminophen (Tylenol) to help reduce symptoms. In a very small number of individuals with known allergic hypersensitivity reactions (i.e., those who carry an EpiPen for allergic reaction to peanuts, eggs, or shellfish), there is a chance you might have an allergic reaction to the vaccine. The risk-benefit ratio of COVID-19 vaccination in these individuals should be discussed with care providers. Other unexpected or more severe side effects are not out of the question with any vaccine, including any of the COVID-19 vaccines, but we suspect these will be rare and that the benefits of vaccination to our patients, their family members and close contacts, and society as a whole, outweigh the likelihood of the risk of any severe, unexpected side effects.

Will Children be Vaccinated?

To date, large trials in children under age 12 have not been completed. The current vaccine approval is for individuals >12 years of age. We expect that children and early teens eventually will get vaccinated for COVID-19 when distribution channels and supplies allow for it and after gathering more safety and efficacy data on the vaccine in adults. It is likely that the FDA will want to assess safety data from a future vaccine trial in children.

Should I Receive the COVID-19 Vaccine?

The decision to receive the COVID-19 vaccine is a personal one. However, in view of the clear and documented effectiveness (>90%) of the vaccines in clinical trials and relatively benign safety profile, it is highly likely the COVID-19 vaccine will lead to immunity from COVID-19 infection. Since COVID-19 infection can lead to hospitalization, long-term post-infection consequences to bodily function, and death (>300,000 Americans have died from COVID-19), all clinical indicators and prudence would dictate you and your loved ones should receive the vaccine to protect you from COVID-19 infection.

If I Get the Vaccine, Will Everything be “Normal Again”? Can I Stop Social Distancing? Can I Stop Wearing a Mask?

The CDC and other experts have stated clearly the COVID-19 vaccine is yet another means to prevent COVID-19 infection and should be viewed as an additive to social distancing and mask-wearing. Data to date demonstrates maximum immunity following the COVID-19 vaccine will not be attained until 2 weeks following the second vaccination or about 5-6 weeks after the first vaccination. Currently, it is recommended that even after you have received the vaccine, you should continue practicing social distancing and mask-wearing, avoid large social gatherings, continue good handwashing practices, and quarantine yourself if you have been exposed to someone with known COVID-19 infection, or if you develop symptoms of COVID-19 infection, such as fever, chills, cough, loss of taste or smell, diarrhea, headache.

Important Information About Covid-19

Covid-19 & Your Loved One

Self-Care for Parents and Caregivers

Medical Review Note

This information was reviewed and approved by our friends at the TS Alliance and their medical advisors:

  • Peter B. Crino, MD, PhD, Chair, TS Alliance Board of Directors
  • Darcy A. Krueger, MD, PhD, Chair, TS Alliance Professional Advisory Board
  • Mustafa Sahin, MD, PhD, Chair, TS Alliance International Scientific Advisory Board and Co-Chair, TS Alliance Science and Medical Committee
  • John J. Bissler, MD, TS Alliance Professional Advisory Board
  • Nishant Gupta, MD, Director of LAM Clinic Network
  • Elizabeth Petri Henske, MD, TS Alliance Professional Advisory Board
  • Elizabeth A. Thiele, MD, PhD, TS Alliance Professional Advisory Board

LGS Foundation, along with TS Alliance and 50 Other Advocacy Organizations Pushes for Prioritization of Individuals with Rare Diseases and Caregivers for COVID-19 Vaccines

The LGS Foundation and nearly 50 advocacy groups and healthcare providers, lead by the TS Alliance, created a coalition urging Governor Andrew Cuomo of New York to include individuals with rare diseases and primary caregivers of high-risk individuals as priorities in the administration of any FDA-approved or authorized COVID-19 vaccines. The coalition submitted a jointly signed letter to Governor Cuomo on Monday, January 15, 2021.

On February 12, 2021, the TS Alliance, along with LGS Foundation, led a group of 69 advocacy groups, healthcare providers, and biotech companies to submit a letter to the National Governors Association. To date, 74 partners have signed onto a letter that has been submitted to several states and will be submitted to every state over the coming weeks so that vaccination is prioritized for those with LGS and their caregivers.