ramsay hunt

 

 

Virtual Support Group Co-Sponsored by AnCan and the Ramsay Hunt Syndrome Foundation.

Understanding RHS

Ramsay Hunt syndrome (RHS) is one of the leading causes of facial paralysis, but for the people who experience it, it’s so much more than a medical condition. Symptoms often appear suddenly—sometimes within just a day or two—and can include intense ear pain, dizziness, a blistering rash, changes in hearing, and facial paralysis. Many patients are first told they have Bell’s palsy, only to learn later that RHS is usually more severe and can make recovery far more challenging.

​Behind every diagnosis is a real person facing fear, uncertainty, and a life turned upside down.

That’s why the Ramsay Hunt Syndrome Foundation (RHSF) was created in 2024—to ensure that no patient has to walk this journey alone.  The RHSF mission is to improve care, expand understanding, and support every individual and family affected by RHS.

In partnership with the AnCan Foundation, we are hosting our virtual group video chats twice a month – See below for times and joining specifics.  

Links we think you’ll find useful on the RHSF website: 

Mental Health

Patient Stories

Books we Recommend

Instructions for Joining a Group

Click HERE for instructions on joining a group.

Click HERE to sign up for email reminders for this, and other groups we offer.

All of our groups are FREE...

and you can drop in at any time!

Quick Links

 

 Click HERE for a complete list of resources

Upcoming Ramsay Hunt Syndrome Groups

Ramsay Hunt Syndrome

With this national online support group you will be able to do a video chat with others who are affected by Ramsay Hunt Syndrome and their caregivers: if you don’t feel comfortable with video, you will be able to call-in also, but we do ask that we are able to put your first name in the room so we know who is talking.

Hosted by AnCan, our video chat virtual group meets twice a month – on the 1st Thursday of each month at 6:00 pm Eastern (5:00 Central, 4:00 Mountain, and 3:00 Pacific) and on the 4th Sunday of each month at 9:30 am Eastern.  The meetings will be held in the  AnCan Schmier Room.  You can follow the link provided to join online or by phone at +1 646 749 3127 Access # 656-182-845.  See the Joining Instructions Panel above right for more information and other Country Access codes.

Oct
25
Ramsay Hunt Syndrome
9:30 am
Nov
5
Ramsay Hunt Syndrome
6:00 pm
Nov
22
Ramsay Hunt Syndrome
9:30 am
Dec
3
Ramsay Hunt Syndrome
6:00 pm
Dec
27
Ramsay Hunt Syndrome
9:30 am
Jan
7
Ramsay Hunt Syndrome
6:00 pm

Meet our moderators

Elaine Ben-Yaacov
Moderator: Ramsay Hunt Syndrome
Elaine Ben-Yaacov is a clinical social worker with experience in the fields of dementia care and the autism spectrum.  She contracted RHS in 2024, an experience that impacted her to write a medical memoir, available on Amazon.  She is a proud mom of five and grandmother of nine.
Amy Sameck
Moderator: Ramsay Hunt Syndrome
Diagnosed with Ramsay Hunt Syndrome in November 2019, Amy has works with the Ramsay Hunt Syndrome Foundation, supporting and navigating others with facial paralysis. She ran the collaborative book project "The Hunt for My Smile", bringing together 24 authors from seven countries to share their experiences with facial paralysis
Imaobong Ndon
Moderator: Ramsay Hunt Syndrome
After experiencing facial paralysis in 2018 and navigating years of treatment, synkinesis, and recovery, she turned her journey into a mission to encourage others affected by facial paralysis, including Bell’s palsy and Ramsay Hunt syndrome. "My smile is in construction."
Julie Berg
Moderator: Ramsay Hunt Syndrome
What started as an earache led to a Ramsey Hunt syndrome diagnosis and a year spent chasing every treatment and specialist I could find. As an LCSW and mom of three, I threw everything I had into fixing my face — and eventually into learning how to live fully with it instead.
Lysa Arthur
Moderator: Ramsay Hunt Syndrome
I’m a Ramsay Hunt Syndrome survivor. That experience became one of those moments that divides life into a before and an after. It tested me, changed my perspective, and showed me what real persistence looks like.
Melanie Albin
Moderator: Ramsay Hunt Syndrome
In 2013 I dealt with a prolonged attempt to diagnose my Ramsay Hunt Syndrome. I ended up with complete left vestibular damage and vertigo, and after 18 months my facial paralysis only improved from 84% to 64% and I've dealt with other episodes since then. I find I can draw on my skills as a marriage and family therapist to cope with the lifestyle and physical changes that come as a result of RHS.

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Resources

Past Recordings

If you’re curious about the format of a virtual support group, click HERE to see recordings of past groups.
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Our services are free, but if you benefit then please consider a tax deductible donation. 

AnCan does not provide medical advice – we do empower you to manage your own care.

​Our calls are recorded and posted on this website for later listening; please note we are a peer-to-peer support group and not subject to HIPAA compliance.

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