A room full of people who just get it
I went as a member of the RHSF Advocacy Committee. I also went as someone who has lived with RHS myself.
People came from across the US and Canada. For many of us, it was the first time meeting others with RHS face to face.
That's the part I keep coming back to: finding your tribe. Nobody had to explain the eye that won't fully close, or the smile that pulls to one side. Nobody had to hide. We understood each other without having to say a word.
What we learned
The day mixed expert sessions with hands-on workshops and patient stories. Here's what stood out, and what it can mean for you.
Synkinesis has more than one answer
Synkinesis is the tightness and unwanted movement that can develop as the facial nerve recovers. Sessions covered several ways to manage it: medication such as Botox, neuromuscular re-education to retrain how the face moves, and meditation to help the face relax. In a hands-on workshop, expert facial nerve therapists coached people through these techniques one on one.
The takeaway: no single treatment fits everyone. A combination, tailored to you, often works best.
Pain is real, and it can be treated
In "Facing the Pain," facial pain expert Dr. Wolfgang Liedtke explained why RHS can cause pain that lingers long after the rash is gone. We also practised hands-on techniques to ease tension and discomfort.
If you live with pain after RHS, tell your care team. It deserves its own plan.
Mental health is part of recovery
RHS affects more than the face. Several sessions focused on managing the emotional side of recovery, including how to live with synkinesis day to day. Physical therapist Mara Robinson walked us through the science of mindfulness and simple practices to build into daily life.
Metamorphosis: who we become after facial paralysis
Author Dr. Faye Linda Wachs shared her own experience with facial palsy, along with what she learned from interviewing people living with facial difference. Her talk explored identity, the small hurtful moments many of us face, and the path to resilience.
Hearing each other's stories, and asking the experts
Some of the most powerful moments came from patients sharing their own RHS stories. In the "Ask the Experts" roundtable, clinicians answered questions on balance, hearing loss, pain, and facial paralysis.
I left feeling more connected to this community than ever.
Staying connected after the summit
Free online RHS support group
You don't have to travel to find your tribe. At the summit, RHSF launched a free online support group, co-hosted with the AnCan Foundation. It's peer-led, and you can join by video or phone.
- 1st Thursday of each month: 3:00 pm Pacific (6:00 pm Eastern)
- 4th Sunday of each month: 6:30 am Pacific (9:30 am Eastern)
Drop in any time, no registration needed.
Find the group and joining details