Listen to “WHAT HAPPENS WHEN YOUR CHILD HAS A RARE AND DEBILITATING DISORDER CALLED RETT SYNDROME. ” on Spreaker.
IMAGINE THAT YOUR CHILD REACHES THEIR DEVELOMENTAL MILESTONES AS EXPECTED FOR THE FIRST SIX TO 18-MONTHS OF THEIR LIFE. THEN, WITHOUT WARNING, STOPS PROGRESSING AND BEGINS TO LOSE THE COMMUNICATION AND MOTOR SKILLS THEY’VE JUST STARTED TO LEARN.
THAT’S WHAT HAPPENS WHEN YOUR CHILD HAS A RARE AND DEBILITATING DISORDER CALLED RETT SYNDROME.
HERE DURING OCTOBER’S RETT SYNDROME AWARENESS MONTH TO DISCUSS THE CONDITION, ITS IMPACT ON FAMILIES, AND THE FDA APPROVAL EARLIER THIS YEAR OF THE FIRST DRUG TO TREAT THIS SYNDROME THAT OFFERS NEW HOPE FOR PATIENTS, ARE DR. STEVEN SKINNER AND KASSIE, WHOSE TWIN DAUGHTERS BOTH LIVE WITH RETT SYNDROME.
Dr. Skinner:
· What is Rett syndrome? And what is the impact of the symptoms on those living with this condition?
· What do parents need to know about the first treatment option approved by the FDA for Rett syndrome?
· Where can people go to learn more?
Kassie:
· What prompted you to see a doctor for your daughters and what challenges have you and your daughters faced living with Rett syndrome as it progressed?
· What does it mean to you and your daughters now that there is the first-ever approved treatment for Rett syndrome?
#rettsyndrome #rett #drstevenskinner #kassiemorrell #debilitatingdisorder #children
