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8 Celebrities Who Live With Ehlers-Danlos Syndrome: Latest 2024 Health Updates

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Ehlers-Danlos Syndrome (EDS), a complex group of inherited connective tissue disorders, affects the body's collagen structure, leading to a spectrum of debilitating symptoms from chronic pain to joint hypermobility and organ fragility. As of December 2025, a growing number of high-profile celebrities and public figures have bravely stepped forward to share their 'zebra' stories—the nickname for those with rare diseases—shining a much-needed spotlight on this often-misunderstood condition.

This listicle not only details the lives and diagnoses of these famous individuals but also provides the most current information, including 2024 health updates and the latest breakthroughs in EDS research, offering hope and validation to the global EDS community. The visibility of these stars is transforming the narrative around chronic illness, moving it from a private struggle to a public conversation about resilience and advocacy.

Profiles in Resilience: Biographies of Famous EDS Advocates

The decision for a celebrity to disclose a diagnosis like Ehlers-Danlos Syndrome is a powerful act of advocacy. By sharing their personal struggles with joint hypermobility, chronic pain, and the diagnostic odyssey, these individuals provide vital representation and drive awareness for this connective tissue disorder. Below are the complete profiles of the most prominent figures currently speaking out about their lives with EDS.

Billie Eilish Pirate Baird O’Connell

  • Born: December 18, 2001, Los Angeles, California, USA
  • Occupation: Singer-songwriter, Pop Icon
  • Connection to EDS: Billie Eilish has been open about her struggles with joint hypermobility, a key feature of Hypermobile Ehlers-Danlos Syndrome (hEDS). She has publicly stated that she has been dealing with chronic pain since she was nine years old, a common experience for those with EDS. Her condition has caused her to sustain injuries, forcing her to modify her signature energetic performance style.

Ashley Nicolette Frangipane (Halsey)

  • Born: September 29, 1994, Edison, New Jersey, USA
  • Occupation: Singer-songwriter, Alternative Pop Artist
  • Connection to EDS: Halsey received a series of challenging diagnoses in 2022, following the birth of their son. This complex diagnosis included Ehlers-Danlos Syndrome, alongside Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Sjögren's syndrome, and Lupus. This combination of conditions is common among "zebras" and highlights the multifaceted nature of the connective tissue disorder. They have used their platform to share their health journey, including their struggles with hospitalizations and managing multiple autoimmune conditions.

Jameela Alia Jamil

  • Born: February 25, 1986, Hampstead, London, England
  • Occupation: Actress, Presenter, Activist
  • Connection to EDS: Jameela Jamil was diagnosed with Ehlers-Danlos Syndrome at the age of nine. She has been a vocal advocate, using her social media to demonstrate the hypermobility aspects of the condition. Her public health disclosures have unfortunately been met with skepticism and accusations of Munchausen syndrome, which she and her partner have strongly denied. Despite the controversy, Jamil continues to raise awareness for EDS and other chronic illnesses, including celiac disease, emphasizing the need for greater understanding and empathy.

Selma Blair Beitner

  • Born: June 23, 1972, Southfield, Michigan, USA
  • Occupation: Actress
  • Connection to EDS: Selma Blair, who was diagnosed with Multiple Sclerosis (MS) in 2018, recently shared a health update in early 2024, revealing that she also lives with Ehlers-Danlos Syndrome. Although her MS is in remission, she stated that she still experiences daily chronic pain due to EDS. Blair has been transparent about how the connective tissue disorder causes difficulties with stretching and takes a major toll on her body, adding another layer of complexity to her chronic illness management.

More Public Figures with Ehlers-Danlos Syndrome

The list of public figures with Ehlers-Danlos Syndrome continues to grow, fostering a sense of community and destigmatizing the rare disease experience. These individuals, often referred to as 'zebras,' use their visibility to highlight the need for better diagnostic tools and comprehensive care for this genetic disorder.

  • Sia: The chart-topping singer-songwriter publicly shared her experience with EDS on social media in 2019, drawing attention to the link between the condition and chronic pain.
  • Lena Dunham: The creator of the series Girls has discussed her struggles with hypermobility and chronic illness, a common presentation of Ehlers-Danlos Syndrome.
  • Yvie Oddly: The drag performer and winner of RuPaul's Drag Race has openly discussed how their EDS-related joint hypermobility affects their body and performance, raising awareness within the LGBTQ+ community.
  • Cherylee Houston: A British actress known for her role in Coronation Street, Houston is a prominent advocate for disability rights, often speaking about her life with EDS and its impact on her mobility.
  • Allysa Seely: A successful American paratriathlete, Seely has used her platform as an elite athlete to discuss how she manages her EDS while competing at the highest level.
  • Rebecca Yarros: The author of the bestselling novel Fourth Wing has been open about her family’s experience with Vascular Ehlers-Danlos Syndrome (VEDS), bringing attention to one of the most severe types of the condition.

The Science of the 'Zebra': Understanding Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is not a single condition but a group of 13 distinct types of inherited connective tissue disorders, all caused by defects in collagen production or processing. Collagen is the protein that provides structure and strength to the body's connective tissues, including skin, joints, blood vessel walls, and organs. When this protein is faulty, the resulting symptoms can be systemic and severe.

The most common type is Hypermobile Ehlers-Danlos Syndrome (hEDS), characterized by extreme joint hypermobility, chronic musculoskeletal pain, and frequent joint dislocations or subluxations. Other common co-occurring conditions, frequently mentioned by celebrities like Halsey, include Postural Orthostatic Tachycardia Syndrome (POTS), which affects blood circulation, and Mast Cell Activation Syndrome (MCAS), which involves allergic-like symptoms.

The term "zebra" is used within the medical community to describe a rare diagnosis. The saying goes: "When you hear hoofbeats, think of horses, not zebras." For those with EDS, a rare disease, the zebra analogy signifies that their symptoms are often misdiagnosed as more common ailments before the correct connective tissue disorder is identified.

2024 Breakthroughs: The Latest in Ehlers-Danlos Research and Treatment

The increased public awareness fueled by famous individuals is coinciding with significant, up-to-date advancements in medical research. As of late 2024, the focus has shifted toward genetic evaluation and drug development, offering new hope for the EDS community.

Genetic Evaluation and the HEDGE Study

One of the most promising areas is the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study. As of the April 2024 update, The Ehlers-Danlos Society is actively working on identifying the specific genetic markers responsible for hEDS, which remains the only type of EDS without a definitive genetic test. A successful identification would dramatically shorten the diagnostic odyssey for countless patients, moving the diagnosis from a clinical evaluation to a clear genetic finding.

Vascular EDS (VEDS) and Drug Repurposing

For the more severe types, particularly Vascular Ehlers-Danlos Syndrome (VEDS), which is caused by a mutation in the COL3A1 gene and poses a high risk of arterial and organ rupture, research is accelerating drug development. Recent studies have focused on the repurposing of existing medications to mitigate life-threatening vascular events. Furthermore, as of May 2024, Zevra Therapeutics is actively seeking participants for a clinical trial for VEDS, marking a critical step in developing targeted treatments for this life-threatening condition.

Regenerative and Gene Therapy Approaches

Cutting-edge research is also exploring regenerative therapies, such as stem cell therapy, as a very recent development in Ehlers-Danlos treatment, aiming to repair damaged connective tissues. Simultaneously, gene therapy approaches are being investigated to correct the underlying genetic faults, offering the potential for a curative strategy, especially for conditions like VEDS.

The combined advocacy of famous figures and the rapid advancements in 2024 research are generating unprecedented momentum. Their stories of managing chronic illness, from joint instability to complex co-occurring diagnoses, are not just inspiring; they are instrumental in pushing for the medical funding and public recognition that the Ehlers-Danlos community deserves.

8 Celebrities Who Live with Ehlers-Danlos Syndrome: Latest 2024 Health Updates
ehlers danlos famous people
ehlers danlos famous people

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