Dear A-T Families,

The A-T Children’s Project is eager for families of children and adults who have A-T to be as informed as possible as we all plan for the emerging COVID-19 virus outbreak.

We strongly suggest that A-T families review the information that is provided by the Centers for Disease Control and Prevention. It provides guidelines for people who have underlying health conditions like A-T, which place them at higher risk.

In addition, Dr. Howard Lederman, director of the A-T Clinical Center, has provided the following guidance.

People with A-T are considered at high risk for complications. Those who have chronic lung disease, are currently receiving chemotherapy or received chemotherapy within the last 12 months, or have diabetes have a particularly increased risk of complications. All A-T families should take these important steps:

  • Practice everyday precautions by washing your hands frequently and thoroughly, and keeping your hands away from your face.
  • Avoid contact with people who have flu-like symptoms (cough, fever or muscle aches).
  • Avoid crowds, especially in poorly ventilated places.
  • When you go out in public, keep a distance of six feet from others. Do not shake hands, hug or kiss.
  • Avoid all non-essential travel, especially plane trips and cruise ships, and discourage people traveling from long distances to visit.
  • Do not travel out of the country.
  • Stock up on several weeks of medicines, food and other supplies in case you need to stay home for prolonged periods of time.
  • Decisions about if or when to begin more stringent isolation procedures (such as staying at home) can be guided by the public health department’s decision to close public schools in your local community.

The best thing we can do is prevent the child or adult with A-T from getting the disease by avoiding exposure to the COVID-19 virus. But be vigilant and act quickly if you think your child is sick. If they have a fever, cough, muscle aches – and especially respiratory distress – contact your local doctor or emergency room by phone to arrange for diagnostic visit. (In an emergency, call 911.) If it turns out that they’ve been infected with COVID-19, their disease symptoms will be managed in the same way as for other people who contract this disease. That is, at this time, we do not recommend any different treatments for A-T patients.

If you have important, specific questions about your child’s risks or symptoms, Dr. Lederman has kindly offered to let you call his office phone number: 410-502-3854. We greatly appreciate his willingness to make himself accessible to us.

Importantly, this situation is evolving really quickly. Dr. Lederman recommends that you monitor the CDC’s website for up-to-date information. These two fact sheets from the CDC may also be helpful:

What You Need to Know and What to Do if You Get Sick

The A-T Children’s Project will be staying in close contact with Dr. Lederman and other A-T experts and will send additional emails with advice related to A-T and COVID-19 as new information becomes available.

Please take care,

Jennifer Thornton, Executive Director

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