Ehlers Danlos Syndrome in Movies and TV Shows

The Portrayal of Ehlers-Danlos Syndrome in Television Shows and Movies

Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders affecting connective tissues, characterized by symptoms like hypermobile joints and highly elastic skin. While EDS presents serious and often debilitating challenges, it has been incorporated into various television narratives, offering audiences insights into the lives of those affected. This article highlights notable portrayals of EDS across a range of Movies and TV shows, from medical dramas to reality series, and acknowledges actors and celebrities with EDS who have brought visibility to the condition through their platforms.

Shows for Kids

• Spider-Man: Across the Spider-Verse (2023): Charlotte Webber, also known as Sun Spider, has Ehlers-Danlos Syndrome and uses a wheel chair. Her special spidey powers enable her to traverse New York City with the wheel chair on her back.

Dramatic Portrayals

• Fourth Wing (Upcoming): Based on the bestselling book series by Rebecca Yarros, this new series features Violet Sorrengail, a young woman with Ehlers-Danlos Syndrome (EDS), navigating the challenges of becoming a dragon rider at a brutal military college. The Amazon MGM Studios adaptation of Fourth Wing and The Empyrean series brings significant visibility to EDS through the lead character, Violet, as well as through author's personal experience with the condition. The author, Rebecca Yarros, has EDS, and she incorporated her deep personal experience with EDS into Violet's character. This authentic portrayal highlights Violet’s physical struggles, such as joint instability, as well as her resilience in the face of immense challenges.
• House M.D. ("The Dig" - Season 7, Episode 18): This episode from the acclaimed series "House M.D." features a patient with EDS, exploring the diagnostic complexities associated with the syndrome amidst the protagonist's team dynamics.
• Bones (Season 4, Episode 5): "Bones" incorporates EDS into a forensic narrative, using the condition to identify a victim, thus subtly educating its audience about EDS.
• Transplant: A Canadian medical drama that presents a realistic portrayal of a patient with EDS, highlighting the common issue of medical gaslighting and the challenging journey towards a correct diagnosis.
• The Good Doctor (Season 3, Episode 17): Focused on vascular EDS, this episode is noted for its accurate depiction of the condition and the serious medical risks it poses.
• Doctor G: Medical Examiner: This real-life case study within a documentary format explores the tragic story of a pregnant woman with EDS, delving into the ethical and medical challenges of her condition.
• Grey's Anatomy: Having featured EDS in two episodes, "Grey's Anatomy" contributes significantly to public awareness and education regarding Ehlers Danlos Syndrome.
• Alice & Jack (Season 1, Episode 5): Jack is diagnosed with Ehlers-Danlos Syndrome after he suffers an aneurysm. After his diagnosis, doctors work to ensure there aren't any complications that might affect Jack's heart.

Reality and Documentary Shows

• So You Think You Can Dance and Dancing With the Stars have featured contestants Kaylee Bay with EDS and Kelly Osbourne with Hypermobility both of whom showcase their talent and resilience
• Mystery Diagnosis: This show provided a glimpse at the diagnostic process for individuals with EDS.
• Taking Care of Maya: This Netflix Special focuses on a family dealing with CRPS, closely linked to Ehlers-Danlos Syndrome, offering a view into the tragedies that families face when dealing with poorly understood conditions.
• Crack Addicts: This show about chiropractic care features an episode highlighting the challenges of Ehlers-Danlos Syndrome (EDS), focusing on a young woman whose daily life is affected by joint dislocations and bones popping out.

Unintentional Representations

Interestingly, some TV shows and films have inadvertently portrayed EDS through actors and actresses who have the condition in real life, thereby contributing to the visibility and awareness of EDS in the entertainment industry:

• The Good Place: British actress Jameela Jamil, known for her role as Tahani Al-Jamil, has openly shared her experiences with EDS, using her platform to raise awareness.
• RuPaul's Drag Race: Contestant Yvie Oddly has discussed her EDS diagnosis and its impact on her life and performance, bringing attention to the condition in the context of the show.

Misconceptions About Ehlers-Danlos Syndrome in TV Shows and Movies

TV portrayals of Ehlers-Danlos Syndrome (EDS) have contributed to a mix of awareness and misconceptions. Here are some common inaccuracies presented in television:

1. Prevalence: Despite being depicted as exceedingly rare on TV, EDS comprises a group of disorders that are more common than often realized.
2. Inheritance Patterns: Not all EDS types have known genetic markers, and there is a growing body of evidence that suggests other factors can trigger the onset and progression of EDS, including an infection with Covid-19.
3. Severity: Contrary to its portrayal as a minor or extremely severe ailment, EDS encompasses a wide spectrum of presentations that impact many different body systems, causing chronic pain, joint issues, and more.
4. Symptom Diversity: TV shows frequently associate EDS with highly elastic skin, overlooking the fact that symptoms vary across different types, including skin that bruises easily but isn't necessarily stretchy.
5. Risk of Complications: Portraying EDS as harmless ignores the serious risks associated with the condition, especially in vascular EDS, where there's a heightened risk of organ and artery rupture.
6. Symptom Specificity: The focus on hypermobility and stretchy skin as universal symptoms neglects the diversity of symptoms across different populations and subtypes of EDS.

These misconceptions underscore the need for more accurate and nuanced representations of EDS in media, highlighting the importance of consulting reliable medical sources for information.

Conclusion

Television's and Hollywood’s engagement with Ehlers-Danlos Syndrome, whether through scripted narratives, reality TV, or the lives of celebrities, has significantly contributed to raising awareness and understanding of the condition. These portrayals, ranging from the dramatic to the documentary, and even to the real-life experiences of actors and celebrities, collectively contribute to a more informed and empathetic public view. As the entertainment industry continues to explore rare conditions like EDS, it's vital that these stories are told with accuracy, respect, and dignity, ensuring an authentic representation of the challenges faced by those with EDS.

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