Supporting Families. Saving Lives.
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The SADS foundation is providing regular updates for our communities. Sign up here so you don't miss anything! SADS Foundation staff members continue to provide services to our families, health care professionals, and colleagues. We're working from home, so please reach us by e-mail at sads@sads.org or on our Family Support Help Line 801-948-0654.
Children or adults with inherited arrhythmias (e.g. LQTS, BrS, CPVT, etc.) are not at greater risk of contracting COVID-19 than anyone else. The CDC recommends: To maximize protection from the Delta variant and prevent possibly spreading it to others, wear a mask indoors in public if you are in an area of substantial or high transmission.
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We have received questions from patients regarding allergic reactions to the COVID-19 vaccine and use of an Epi pen. According to published articles, there is no absolute contraindication to giving epinephrine to a patient with anaphylaxis, and the patient with LQTS is no exception. Airway obstruction from angioedema, respiratory failure from bronchospasm, and circulatory collapse from anaphylaxis are immediately treatable with prompt administration of epinephrine. Michael J. Ackerman, MD, PhD, director of the Long QT Syndrome Clinic and professor of medicine, pediatrics, and molecular pharmacology at the Mayo Clinic College of Medicine, Rochester, Minnesota, has said, “For the past 20 years in our clinic, we have recommended an Epi-Pen for our LQTS patients who have concomitant severe allergies,” for which the prevalence is the same as in the general population. These patients have rarely had to use their Epi-Pen, and when they have, it was effective. Dr Ackerman says that the notion that beta blockers render epinephrine ineffective seems erroneous. “The only real issue that I have seen is when such patients were counseled not to have an Epi-Pen or were scared to use it out of fear that it might awaken their LQTS substrate, and there was then a delay in treating the anaphylactic reaction.”
updated 3/21/2020 The SADS Foundation is staying informed about COVID-19 and the concerns of our communities. The peace of mind and safety of families living with SADS conditions are of utmost importance. We understand that the spread of COVID-19 (aka novel coronavirus) globally can cause alarm. If you are uncertain about symptoms, risk factors, travel recommendations, or more, we remind you to follow guidelines provided by the Centers for Disease Control and Prevention (CDC). The most up-to-date information can be found on the CDC’s website. With the spread of the novel coronavirus, COVID-19, in the United States, The SADS Foundation, in collaboration with members of our Scientific Advisory Board, would like to echo the Centers for Disease Control and Prevention (CDC) guidance regarding the virus for the SADS Community. We are monitoring the risks associated with COVID-19 and, if we see any changes that directly impact our community, we will provide updates at StopSADS.org. The SADS Foundation has made the following decisions regarding these upcoming events:
ARVC/D “The facts are first and foremost that we of course have NO data on how ARVC patients who may have been affected by COVID-19 have done. So we are basing this off of data we know---we know that the patients who are at high risk of complications are those with hypertension, diabetes, heart failure, and coronary disease, and respiratory issues—none of which apply to MOST (not all) ARVC patients. Dr. Calkins and other inherited HD physicians that take care of patients with primarily arrhythmia issues have been telling patients they are not at high risk of complications.” Brittney Murray, MS, CGC Johns Hopkins Hospital For Timothy Syndromes “The Coronavirus is a significant respiratory condition and mostly affects those over 60 years, and those with pre-existing conditions (most prominent, diabetes). Also of note, males seem to have greater problems than females in general. With this in mind and knowing the TS male is more vulnerable to experiencing respiratory problems, and all TS children, particularly when dealing with infections, have significant concerns for hypoglycemia, SADS would like to make a few suggestions for what might help to keep them safe. Until this threat is over keep your children away from crowds. Teach them to wash their hands whenever they go out and return. Try to encourage them from touching others, and it is recommended that they stay at least 6 feet away from others. Keep children away from any other children with any colds or flu-like symptoms. Keep them well hydrated, eating healthy foods, etc. We hope to not frighten any of you. We just hope if this threat becomes a problem, we will be prepared to keep the children safe. With this in mind, it might be good for families to have food, water, medicines and other supplies on hand to last until the threat is over. It might be that home is the safest place to be.” Take care and sending each of you my concern and warmest regards, Katherine Wilson Timothy
Microscopic image of COVID-19. (CDC/Hannah A. Bullock, Azaibi Tamin)
March 2020