Stay Safe While Waiting

It can take a while to get an appointment with a SADS expert, and it can take even longer to get some test results back, such as genetic testing results.

Here is a list of things you do to stay safe and healthy while you are waiting for your appointment.

Follow the Drugs to Avoid List

If there is a chance you have a SADS condition, make sure you don’t take any drugs that could make your condition worse:

List of Drugs to Avoid for Brugada Syndrome Patients

List of Drugs to Avoid for Long QT Syndrome Patients

Learn CPR and Know Where The AEDs Are

If you or someone in your family might be at risk of a sudden cardiac arrest, make sure everyone in the family knows CPR, and notice where AEDs are.

Check Your Health Insurance

Check to see if your policy will cover medically necessary diagnostic and treatment options.

Consider Getting Life Insurance

Many patients have difficulty qualifying for life insurance, and some health insurances once they have a diagnosis from their doctor. Consider getting a plan before your diagnosis.

Our recommended LQT1 life insurance option

If Anyone In Your Family Has Symptoms, Urge Them To Get Screened Immediately

 If a family member is fainting, is diagnosed with epilepsy, there is a strong family history or has other warning signs for a SADS condition, don’t wait until you are diagnosed, have them get screened by an expert immediately.

Avoid Triggers for SADS Conditions

  • Stay hydrated, especially if you are sick
  • Avoid low potassium levels by eating foods high in potassium
  • Only swim with a buddy who knows about your pending diagnosis, and know where the pool AED is located
  • Take phones and alarms out of the bedroom
  • Follow personalized activity recommendations (e.g. exercise, sports, etc.) from your doctor

Learn About Treatment Options

The main aspects of treatment involve:

  • Medications
    • Beta Blockers
  • Left Cardiac Sympathectomy Dennervation (LCSD)
  • ICDs

Make sure you get information from reputable sources!

If you are anxious about a diagnosis, you might be on the internet doing research. There is a lot of incorrect and scary information on the internet. Make sure you only get your information from trusted sources such as the SADS website, the Mayo Clinic website, and other information from your doctor.

Contact the SADS Foundation with questions, we have a friendly staff who are happy to answer any questions you might have, or direct you to medically accurate answers.