Halsey Diagnosed with EDS, MCAS, POTS, Sjögren's, Lupus, and Other Chronic Conditions

Halsey's Medical Journey with the EDS Trifecta and more:

Halsey, born Ashley Nicolette Frangipane, has long captivated audiences worldwide with their evocative lyrics and distinctive voice. Known for chart-topping hits like Without Me and Closer, the Grammy-nominated artist has recently made headlines for a different reason: their complex health journey. Following the birth of their son Ender Ridley in 2021, Halsey revealed a series of challenging diagnoses, including Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Sjögren's syndrome, and more recently, lupus and a rare T-cell lymphoproliferative disorder. Their openness about these health battles has resonated with fans and contributed significantly to public awareness of these often misunderstood chronic illnesses.

A Long Road to Diagnosis

Halsey’s health struggles date back years before their public diagnosis. In interviews, they described the difficulties of living with unexplained symptoms and the lengthy, frustrating journey to find answers. "I didn’t ‘just get sick’ — I’ve been sick for a long time," Halsey explained, clarifying that doctors had initially dismissed their symptoms, often attributing them to anxiety or laziness. Despite these setbacks, they persisted through years of medical appointments and hospitalizations, even suffering multiple anaphylactic reactions without a clear diagnosis.

After years of persistence and "seeing like 100,000 doctors," as Halsey once described, they finally received concrete diagnoses. They were diagnosed with EDS, MCAS, POTS, and Sjögren’s syndrome, alongside lupus and a rare T-cell lymphoproliferative disorder in 2022. Halsey has shared that while these autoimmune conditions are "being managed or in remission," they will likely live with them for life. This combination of conditions, sometimes called the “EDS trifecta” when it includes MCAS and POTS, represents a unique array of challenges.

Breaking Down Halsey’s Diagnoses

Each of Halsey’s diagnoses brings its own challenges and complexities:

• Ehlers-Danlos Syndrome (EDS): This group of connective tissue disorders affects the skin, joints, and blood vessels. Hypermobile EDS, the type most often seen with MCAS and POTS, leads to joint instability and chronic pain. As a genetic condition, EDS has no cure, and symptoms must be managed throughout a patient’s life.
• Mast Cell Activation Syndrome (MCAS): MCAS is characterized by an overactivation of mast cells, immune cells that release histamine and other chemicals in response to allergens. For Halsey, MCAS has contributed to severe allergic reactions, including anaphylaxis, requiring vigilant management with medications and lifestyle changes.
• Postural Orthostatic Tachycardia Syndrome (POTS): POTS affects blood flow and is part of a group of conditions known as dysautonomia. People with POTS experience significant heart rate increases upon standing, causing dizziness, fainting, and chronic fatigue. Managing POTS often involves a combination of hydration strategies, medications, and physical conditioning to mitigate symptoms.
• Sjögren's Syndrome: This autoimmune disorder attacks moisture-producing glands, resulting in dry eyes and mouth but also impacting other organs, from the kidneys to the lungs. Like many autoimmune conditions, Sjögren’s is incurable but manageable with a multidisciplinary approach. Sjögren’s is frequently associate with dysautonomia including POTS.
• Lupus: Lupus is an autoimmune condition in which the body’s immune system attacks its own tissues, causing inflammation, pain, fatigue, and potential organ damage. Halsey shared that they were diagnosed with lupus in 2022, and while it is in remission, lupus can be lifelong and requires careful management to prevent flare-ups.
• T-Cell Lymphoproliferative Disorder: This rare immune condition, diagnosed alongside lupus, involves the overproduction of certain white blood cells, potentially increasing the risk for lymphoma and other complications. Like lupus, Halsey says this disorder is currently in remission but will likely need ongoing monitoring.

The EDS Trifecta and Its Overlapping Challenges

Halsey’s collection of diagnoses represents a striking example of what is informally known as the EDS trifecta: the trio of EDS, MCAS, and POTS. Although these conditions are distinct, they frequently co-occur due to shared factors such as connective tissue involvement and autonomic nervous system dysregulation. The trifecta creates a challenging array of symptoms, from joint pain and fatigue to allergic reactions and cardiovascular instability.

The trifecta’s complex and interwoven nature can make it difficult for patients to receive accurate diagnoses, a reality Halsey understands all too well. In their words, "It took me a long time to get to even having a diagnosis, so I’m celebrating!" By sharing their story, Halsey is helping to raise awareness of the trifecta’s impact on daily life and the need for better diagnostic tools and treatment options.

Celebrities Navigating Similar Health Challenges

Halsey is not alone in managing complex chronic illnesses in he public eye. Stars like Billie Eilish, Jameela Jamil, and Gigi Robinson also share the “EDS trifecta” of Ehlers-Danlos Syndrome, MCAS, and POTS, while Solange Knowles has been open about her experiences with Sjögren’s syndrome, POTS, and MCAS. Athletes and entertainers such as Venus Williams and Carrie Ann Inaba, both diagnosed with Sjögren’s syndrome, have joined the conversation as well. By sharing their health journeys, these public figures are helping to destigmatize chronic conditions, bringing visibility and support to the wider community.

Music as a Source of Resilience

Despite these health challenges, Halsey remains dedicated to their music career, often channeling personal struggles into their artistry. Their latest song, The End, released on June 4, 2024, reflects the intensity of Halsey’s recent health journey. This song serves as a powerful preview to their upcoming album, which delves into the emotions and resilience they’ve drawn upon while facing these challenges. Sharing their experience on social media, Halsey described feeling "lucky to be alive" and expressed gratitude for the chance to continue creating music despite the obstacles. "Long story short, I’m lucky to be alive," they wrote, with The End offering listeners a deeply personal glimpse into their journey.

The End follows Halsey’s acclaimed 2021 album If I Can’t Have Love, I Want Power, which explored themes of motherhood, power, and self-discovery. This latest work, they say, is dedicated to their health journey and a celebration of the resilience they’ve built along the way. By intertwining their story with their art, Halsey uses The End to offer insight into the battles they face and the strength they draw from music.

Navigating a New Normal

While Halsey’s journey has been fraught with difficulties, they approach these health challenges with resilience and a sense of humor. They have spoken about giving themself a deadline of two more years to be sick, after which they envision a life with renewed energy and health. This mindset reflects Halsey’s determination to live on their own terms, even in the face of chronic illness.

As they continue to navigate their health journey, Halsey has become an invaluable advocate for people with complex chronic conditions. By sharing their story, Halsey is not only helping others feel less alone but also shedding light on the urgent need for more research, better diagnostic protocols, and comprehensive support systems for those affected by conditions like EDS, MCAS, POTS, Sjögren’s syndrome, and lupus.

In the face of daunting health challenges, Halsey’s resilience shines through. Their openness and advocacy are reshaping public perceptions of chronic illness, underscoring the message that a diagnosis does not define one’s potential. As they embark on this new chapter, Halsey remains a powerful voice for resilience, awareness, and compassion — an inspiration to their fans and to the broader chronic illness community.

‍

References

• "Celebrities with Mast Cell Activation Syndrome (MCAS)." The EDS Clinic, https://www.eds.clinic/articles/celebrities-mast-cell-activation-syndrome-mcas.
• "Celebrities with POTS Dysautonomia." The EDS Clinic, https://www.eds.clinic/articles/celebrities-with-pots-dysautonomia.
• Ortiz, Aimee. "Halsey Reveals Illness in New Song, Saying They Are 'Lucky to Be Alive'." The New York Times, 4 June 2024, https://www.nytimes.com/2024/06/04/arts/halsey-illness-new-album.html.
• "Famous Celebrities with Hypermobility and Ehlers-Danlos Syndrome (EDS)." The EDS Clinic, https://www.eds.clinic/articles/famous-celebrities-with-hypermobility-and-ehlers-danlos-syndrome-eds.
• Etienne, Vanessa. "Halsey Is 'Celebrating' Recent Health Diagnoses After Being 'Called Crazy': 'I've Been Sick for a Long Time'." People, 12 May 2022, https://people.com/health/halsey-is-celebrating-recent-health-diagnoses-after-being-called-crazy/.
• "Neurodivergent Celebrities Who Live with Hypermobility, EDS, MCAS, or POTS." The EDS Clinic, https://www.eds.clinic/articles/neurodivergent-celebrities-who-live-with-hypermobility-eds-mcas-or-pots.
• "The EDS Trifecta." The EDS Clinic, Mar. 2024, https://www.eds.clinic/articles/eds-pots-mcas-trifecta.
• "The Link between Sjögren’s and Dysautonomia." The EDS Clinic, 2024, https://www.eds.clinic/articles/sjogrens-and-dysautonomia.
• Kolirin, Lianne. "Halsey Reveals They Were Diagnosed with Lupus and a Rare Type of T-Cell Disorder in 2022." CNN, 5 June 2024, https://www.cnn.com/2024/06/05/entertainment/halsey-illness-lucky-alive-scli-intl/index.html.

‍