Living with SADS

Whether you just received a diagnosis of a SADS condition or have lived with a diagnosis for years - this section is filled with information and tips about living with SADS at every stage of life: pregnancy, delivery, infants, children, teens, young adults, older adults.

For Newly Diagnosed People

If you or someone close to you has recently been given a SADS (or SADS related conditions) - you probably have a lot of questions!

About SADS Conditions

Information on the various SADS conditions.

Inform and Help Relatives Obtain Screening

Help save the life of a relative - even one you may not know (like your grandpa’s brother’s grandchildren)! Experts estimate that half of the 4000 SADS deaths each year of children, teens and young adults had one of the 2 top warning signs:

• Family History – of a SADS diagnosis or sudden unexplained death (usually of an  undiagnosed untreated) of a family member
• Fainting/Seizures

The Importance of Genetic Testing

Genetic testing is considered the standard of care for Long QT Syndrome (LQTS) (and other SADS conditions) for both the diagnostic and treatment process. It can help clarify whether someone has the disease (and often if they don’t) and help doctors determine treatment. Below are a few of the different situations where genetic testing can be helpful.

Issues for all ages and life stages

• Pregnancy
• Sports / Exercise
• Diagnosing LQTS in Utero
• ICDs

Understanding Your Risk Profile

SADS Family Seminars

These seminars provide an opportunity to meet and network with other families as well as hear the latest from physician experts on SADS conditions. 

What the SADS Foundation Can Offer

Navigating a sudden unexplained loss

Drugs to Avoid

Dealing With Insurance

Informational Materials