GOLDENHAR DIARIES Part 1 | What is Goldenhar Syndrome?

skip to 2:18 if you don't want to hear me waffle on lol
its been a hot minute...
In this video I talk about my condition and how it affects me.
This is part 1 of a series where I dive deep into detail about Goldenhar Syndrome!
Part 2 will be focused around SURGERY
Subscribe so you don’t miss it!
------------
where to find me
instagram - @stacekershaw
twitter - @stacekershaw
------------
"Angels"
Instrumental by Homage
• [Free] Chill Storytell...

[@spacemonkeymadness]

I was born with a lot of issues, including missing an ear. My baby photos and the thumbnail for this video are like looking in a mirror. I’m not 100 percent sure I have goldenhar or not, but I seem to have a lot of the same cranial structure. Thanks for making this video, I feel like I’m not so alone now. Only met one other person missing an ear. I also am missing a cheek bone, had at least 32 surgeries. Heart murmur, kidney issue, etc.

[@janiehanson7718]

Thank you for taking the time to share your experiences and for educating people about Living with facial deformity in a society obsessed with physical perfection. Your strength and your willingness to open up and be vulnerable is a powerful combination. You are an inspiration to many. Thank you from across the pond! We are cheering for your success! 😘👍🏼🌸

[@elizabethadams2644]

hi there! i have ghs too thank you so much for telling your story. I having debating whether or not to tell my own story and it’s videos like these that push me in the right direction. it’s so nice to see people that look like me on TH-cam! Thank you❤️

[@alisoncurrie7844]

Well done on another interesting and informative video, so so proud to know you. Am I OK to say congrats on your engagement too 😁

[@stacebrewer]

thank you!! love you!! I was supposed to mention the engagement in this video but forgot 😂❤️

[@diane520]

I enjoyed having a cup of tea with you. :) (Yes, I really did have a cup while I watched.) You said you know your own body. It is smart that you listen to what your body is telling you. I can really understand how the issues with your shoulder can trigger pain which even extends to your jaw and even causes headaches. There is real interconnection between all of those areas and tension in one will cause tension in surrounding areas. I have fibromyalgia, and find massage really helpful for pain. But it can hurt before it feels better, lol. I have no idea if that would help for you, but I get your issues with pain and the confusion you feel and fatigue it causes. My body often ignores my pain and I assume it is gone, but it is just that other things keep me from noticing it. When I am doing something interesting I may not notice any pain until I stop, then suddenly I feel pain I had no idea was there. That is called breakthrough pain; it is especially hard at night when I try to sleep. Pain is confusing to doctors as well, and often they just don't have any good way to help. I find functional medicine the most effective, but listening to my own body and finding natural remedies has been the best help for me. Congratulations on your engagement. I noticed the ring!

[@stacebrewer]

Ah thank you for this comment!! Ive tried a massage before and any touch like that is a trigger too. I've had medical botox too and that made it worse!!! My best friend has fibromyalgia and my step dad has arthritis and those are the closest i've got to be able to describe the pain!
Ah thank you, we got engaged in December!! So excited and happy xx

[@Spartanct02]

Thanks for posting and answering my questions! I was glad I found it after it got removed from the Facebook group :/

[@stacebrewer]

Carla Thomas hey!! I knew I should of written your name down along with the question. Sorry about that!! It was me who removed the post from the group. But I’m glad you found the video any way ❤️