Case reports document successful use of pregabalin (Lyrica) to treat challenges related to Bainbridge-Ropers Syndrome

A new case report published this month documents the treatment of an adult with Bainbridge-Ropers Syndrome experiencing extreme challenging behaviors, including self-harm and aggression. The patient was treated with pregabalin (also known by its brand name, Lyrica). The publication states that treatment with pregabalin led to “rapid stabilization of the clinical state, almost complete improvement in challenging behavior and gradual withdrawal of other treatments.” 

In an additional case report shared at the 2024 ASXL Family Conference, Bainbridge-Ropers Syndrome parent Joanna Bailey presented her daughter’s experience with extreme dysregulation frequently requiring hospitalization; these episodes are suspected to be connected to pain with a diagnosis of visceral hyperalgesia. The daughter’s pain episodes have also improved significantly with treatment with pregabalin. 

These are two small case studies and are not necessarily indicative of successfully treating these symptoms in all individuals with Bainbridge-Ropers Syndrome. However, given the significant challenges that extreme behaviors and suspected pain episodes cause for individuals with Bainbridge-Ropers Syndrome and their families, the ARRE Foundation is sharing this information with families experiencing these symptoms for discussion with their medical providers as a potential course of treatment that may not have previously been considered.

If your loved one has had tried pregabalin or Lyrica, we would love to hear from you about your experience! Please reach out to Amanda Johnson (amanda@arrefoundation.org) as we collect further evidence of this medication’s use the ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome).