The announcement that Ehlers-Danlos syndrome (EDS) has been featured on Grey’s Anatomy came like wildfire. After the EDS segment was aired, word spread lightning fast. We shared a few quotes from the show and a link to a video clip someone posted publicly, sharing a segment from when the actors on Grey’s Anatomy came to the conclusion that their perplexing patient most likely had EDS. But we know that some people may have missed the show, and wanted to put the story together along with links to a few of the video clips, and share the compiled story and information here. The full story behind Ehlers-Danlos syndrome’s spotlight appearance on a primetime and very popular syndicated TV show is a pretty exciting one. A few of the main parts of the “behind the scenes” story is shared below, as are quotes from the segment where the Ehlers-Danlos syndrome diagnosis was made.
“She’s not an alcoholic…. “
“Dehydration, Bruises, Hazy, Joint Hypermobility….”
“Fainting spells …. Ehlers-Danlos syndrome?”
“Only seen a few times in my career …. “
“If you are right, you may have just saved this girl’s life.”
Here’s one of the posts shared by The Ehlers-Danlos Society, about the “behind the scenes” story of Ehlers-Danlos syndrome making its primetime TV debut.
“Last night’s episode of Grey’s Anatomy, ‘Falling Slowly’ featured a story-line on Ehlers-Danlos syndrome. The patient in the story was based upon a conversation producers had with a young woman with EDS and her doctor who also has EDS. Both women said that the most relieving thing was having a diagnosis. They could learn how to advocate for themselves; which is not always easy.
The episode featured a patient who had a dislocated shoulder which she had put back in herself. She was found to have easy bruising, other joints that dislocate, dehydration, and syncope. Grey’s favorite, Dr. Karev told the Chief he did not believe she was drug seeking or an alcoholic, but at the same time could not figure out what she had. The Chief put forward an explanation of Ehlers-Danlos syndrome.
Last November, Lara Bloom and Shane Robinson from The Ehlers-Danlos Society met with writers in LA to get Ehlers-Danlos syndrome featured more on TV and film. Here’s hoping this is just the start. Awareness is everything; strength begins with hope.”
To read the original post shared by The Ehlers-Danlos Society, go to https://www.facebook.com/ehlers.danlos/posts/10154451488725336:0
Below is a 2nd post shared about the how Ehlers-Danlos syndrome was spotlighted on Grey’s Anatomy.
“Sending a special thank you to Olivia Herzoff for helping to make last night’s episode of Grey’s Anatomy possible!
Last year for Olivia’s Make A Wish she was granted to attend TED conference in Vancouver, where she met Sara Ramirez and Shonda Rimes. She was invited along with her Doctor, who Olivia chose as her guest, to TED to the set in LA and then to meet with the writers.
Olivia met with the cast and producers for over 3 hours and worked hard to get this episode to happen. We’re so grateful to Olivia for helping to raise the level of awareness around Ehlers-Danlos syndrome.
If you missed last night’s episode catch up with ‘Falling Slowly’!”
To read the full 2nd post, go to https://www.facebook.com/ehlers.danlos/posts/10154452237655336:0
Link to EDS Clip on Grey’s Anatomy – https://m.youtube.com/watch?feature=youtu.be&v=HRvNA1F9tx0
Something we all should keep in mind – it can be easy to fall into the trap of “it’s not good enough to get the real awareness we need,” or “it’s not an accurate portrayal of what EDS really is,” concerning a media story or other public format that shares a story on EDS. Falling into a trap that focuses on the negatives about something that’s supposed to be a positive for our community, does not help our collective cause.
When we posted about EDS being on Grey’s Anatomy, someone expressed concern about the accuracy of the portrayal of Ehlers-Danlos syndrome on a Primetime TV show. Below is our response.
“I understand, but the overall accuracy of the picture painted of EDS was better than it has been. Recommended protocol has been for docs to test for other types of Ehlers-Danlos syndrome and even other connective tissue disorders with overlapping symptoms first — at least, conditions that do have genetic tests available. Some docs do make a clinical diagnosis of EDS-HT, and then send patients to a geneticist or specialist who can run appropriate tests. Once testing has been done, a geneticist or specialist is able to confirm the diagnosis of a type of EDS, other connective tissue disorder, or can make a diagnosis of EDS-HT based on the process of elimination, and proper clinical assessment.
Because we do not know the genetic cause(s) of EDS-HT, or exactly which component(s) of our connective tissues may be directly impacted. The collagen protein is not the only component in our connective tissues. It’s also not the only component that can have a pathological mutation(s) that causes multisystemic dysfunction. Consequently, it appears that some EDS specialists are suggesting that an EDS-HT diagnosis not be made until the updated diagnostic guidelines are published (expected date – March 2017), and proper genetic testing is done. This is especially important if someone has a family history suggestive of a particular type of EDS, or the person has the questionable medical history themselves.
While we know that EDS overall, and specifically EDS-HT, are not so rare, we do not want to discourage docs from identifying or diagnosing it, because it somehow achieved the label of being overly diagnosed — and some do feel as if it is. Right or wrong, if we want to move forward, we have to be open to all opportunities to raise awareness, and credibility in the medical community.”
To read our original comment on our Facebook page, please go to https://www.facebook.com/EDSWellness/posts/1214069978656451
The Mighty’s “Response to doctors who won’t see patients with Ehlers-Danlos syndrome” – https://themighty.com/2016/10/response-to-doctors-who-wont-see-patients-with-ehlers-danlos-syndrome/