Alexis Loveless is a 14-year-old from Louisville, KY who was recently diagnosed with Long QT syndrome. Now, she’s doing her best to raise awareness by sharing her own story of sudden cardiac arrest. The SADS Foundation and American Academy of Pediatrics have taken action to help by raising awareness and improving education and knowledge of sudden arrhythmic death syndrome (SADS), an umbrella that Long QT syndrome falls under.
Alexis’ Story
Alexis’ diagnosis of Long QT syndrome came as a surprise to her family; they only discovered the rare disease after she suddenly fainted at a pep rally back in February. Doctors knew that sudden fainting could point to SADS, leading to her diagnosis.
Since then, Alexis and her family have had to adjust their lives. Loud noises, being startled, and sleep all put her at risk, all of which can be difficult to avoid. Her mother speaks of their situation, asking, “So it leaves you feeling, how am I going to protect my kid?”
While fear is now a factor in their lives, the Loveless family is very thankful for the Long QT syndrome diagnosis. Now that they what it is, they can treat it and give Alexis exactly what she needs. In fact, she recently received an implantable cardiac defibrillator and pacer maker.
These treatments are going to help Alexis’ condition, but at the moment, her recovery is taking her away from what she loves: dance. She hasn’t been able to dance since her fainting spell in February. Luckily, she’ll be able to return to dance in just five weeks.
Improvements for SADS
Like many other rare diseases, SADS often goes unnoticed and suffers from low awareness. The SADS Foundation has been tackling this issue for years, trying to help the thousands of patients who die from SADS annually.
Now they’re receiving some help from the American Academy of Pediatrics, which just released guidelines for pediatricians to ask their patients in regard to SADS. These guidelines consist of just four questions:
- Have you experienced exercise-related chest pain?
- Has any relative died of an unexpected or sudden death, such as drowning or unexplained car accident?
- Are you related to anyone with HCM or hypertonic obstructive cardiomyopathy, or other syndromes/SADS conditions?
- Have you ever fainted or passed out without warning?
While these guidelines will be extremely helpful in helping doctors spot cases of SADS before it is too late, they first have to be implemented. This could be difficult. The guidelines have to make their way to the doctors so that they can be made aware of the changes, and then practitioners must decide if they’ll even implement the guidelines. This can take months.
Hopefully, these guidelines will be implemented across the country, as they could help to prevent unnecessary deaths from SADS. You can find the source article here.
About Long QT Syndrome
Long QT syndrome is a rare heart rhythm condition that is characterized by fast, chaotic heartbeats. These heartbeats can cause seizures, fainting, and even death. Episodes typically coincide with sleeping or waking up. All of these symptoms are the result of a change in the heart’s electrical recharging system, which can be the result of a genetic abnormality, taking certain medications, and low levels of magnesium, potassium, or calcium in the blood. In order to combat the episodes of chaotic heartbeats, doctors can prescribe potassium, fish oil, beta-blockers, pacemakers, and mexiletine. Left cardiac sympathetic denervation surgery is another option.
