Spotlight on our Moderator: Isaiah of the Living with Eagle Community

As written by Sascha Gallardo, Ben’s Friends Resident Writer

It’s Living with Eagle Syndrome community founding anniversary! Specifically, on the 27th of September in 2010, the community that provides online support to patients with Eagle Syndrome was founded.

Through the years, people affected by Eagle Syndrome are able to get support from members of the community who understand exactly what they are going through. By reading stories of other members, they learn better ways of how to handle their situation. Through the community, they also get doctor recommendations and learn to advocate for their own healthcare.

And of course, our community remains safe and supportive through the help of our moderators, who screen and approve requests for membership, welcome new members to the community, and flag posts that do not contribute to the community’s positive atmosphere.

In this blog, we would like to introduce one of the moderators of the Living with Eagle Syndrome community. Isaiah is an active 64 year old wife, mother and grandmother.

Among her hobbies are long-distance hiking (used to be long-distance running) and being a discussion leader in a women’s Bible study small group sponsored by the church she attends. She loves helping people and is learning to be a trained listener.

Below is our interview with Isaiah.

Tell us about your family.

I have been married for 37 years and have two adult children. Our daughter is a nurse and is married and the proud mother of our two grandchildren (ages 3 and 18 months). Our son is a mechanical engineer with a Master’s Degree in Mechatronics. He is industriously working for a startup.

Please tell us about your Ben’s Friends story.

I was diagnosed with Eagle Syndrome in September 2014. Wanting to know more about this mysterious ailment, I did some Google searching and soon came across the link to the Living with Eagles forum.

I had never had anything to do with a forum and was initially afraid of revealing too much about myself but as time went on, I jumped into posting whole-heartedly and soon found myself helping and advising others as much as their posts helped and educated me.

My fellow moderator Jules joined the forum a few months before I did and we found that our ES journeys somewhat paralleled each other. We are a great moderation team!

My first ES surgery was just before Thanksgiving in 2014 and the second in mid August 2015. My second surgery had been scheduled in May but a week prior to the surgery date, I had a cycling accident with a head injury which required postponement of my surgery by four months. As a result of the head injury I sustained, I also ended up with Meniere’s Disease in my left ear. It was a challenging time!

Having my styloid processes and stylohyoid ligaments removed gave me my life back as my ability to be physically active had become dwarfed by the pain and other symptoms I was experiencing from ES.

Tell us about your becoming a moderator of the Living with Eagle community.

In 2015, Jules sent me a private message on the forum telling me that moderators were needed and she was going to take on that role. She asked if I wanted to as well.

At the time I was feeling a bit burned out from being on the forum so much so I declined the opportunity. I posted intermittently over the next year. Then in July 2017, I signed on as a moderator because I realized how much I enjoyed supporting people who were going through what I went through.

What do you love most about the Living with Eagle community?

I love the diversity of our forum members. They are a great group of people who are very awesome at supporting each other and sharing helpful information when needed. It’s a thriving and vibrant community.

Can you tell us any unforgettable story related to the community?

Because I live near where one of the more experienced ES surgeons practices, I’ve been able to meet some of the people from the ES forum face to face prior to their having surgery with him. This has been extremely rewarding for me and hopefully them as well. I have also built some enduring friendships with a few forum members though we’ve never met in person.

Any message you’d like to share?

There is nothing quite so satisfying in life as being able to encourage people who are struggling with their health, and helping them find solutions that bring healing from or effectively manage the symptoms of a rare disease or syndrome.

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Thank you so much Isaiah for all you and Jules do! You are always there to answer our questions and always supportive with such great information! There’s no greater gift in life than to help others through a hard time. It is so comforting to come to a place where people understand. God bless! :heart::heart:

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I would also like to thank Isaiah and Jules! I have received a wealth of information on this site that is so informative and helpful. A bit overwhelming, but good to know! Appreciate all the time and effort and kindness you put into this! God bless you both!

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Your kindness & support while on the list to all of us and help & friendship during surgery stay have been immeasurable. You and Jules are hero’s to many of us. Lifesavers really.Thanks to this patient blog, I was able to quickly identify the proper testing to get diagnosis and then to identify an ES specialist. Much love to you both. :heart_eyes:

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Thank you all for your kind words. It is my (our - speaking for Jules, too) pleasure to be here for you. We’re so thankful for the opportunity to serve you in this way. We hope & pray for complete healing for each of you, & if there are post op challenges, we are here for you then as well.

:heart: :hugs:
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