Celebrities Who Suffer From Rare Diseases

Rare diseases can affect anyone, including people whose lives seem glamorous from the outside.

Some stars have spoken openly about painful symptoms, delayed diagnoses, surgeries, treatment, career changes, and the emotional weight of living with a condition many people do not understand. Others have used their platform to raise awareness for communities that often feel unseen.

This article is not medical advice. It highlights public figures who have publicly discussed rare or lesser-known medical conditions, or whose diagnoses have been reported by reputable sources. A rare disease is commonly defined in the United States as a condition affecting fewer than 200,000 people, though some conditions below are also included because they are uncommon, under-recognized, or publicly discussed in rare-disease awareness spaces.

Here are stars who have lived with rare diseases and helped bring more attention to them.

Celine Dion

Celine Dion brought global attention to stiff person syndrome after publicly announcing her diagnosis in 2022.

The condition is a rare neurological disorder that can cause severe muscle stiffness and painful spasms. Dion explained that the illness affected her daily life, walking, and ability to sing, forcing her to postpone and cancel tour dates while focusing on treatment and recovery.

Gaten Matarazzo

Gaten Matarazzo, best known as Dustin Henderson on Stranger Things, was born with cleidocranial dysplasia.

Cleidocranial dysplasia is a rare genetic condition that affects bone and tooth development. Michigan Medicine noted that Matarazzo’s visibility helped bring attention to a condition many people had never heard of before Stranger Things.

Sia

Sia revealed in 2019 that she has Ehlers-Danlos syndrome, often shortened to EDS.

EDS is a group of connective tissue disorders that can affect joints, skin, pain levels, fatigue, and injury risk. ABC reported that Sia described living with chronic pain related to the rare condition and used her message to encourage others dealing with pain not to feel alone.

Halsey

Halsey has been unusually open about living with multiple chronic health conditions.

The singer has publicly discussed diagnoses including Ehlers-Danlos syndrome, mast cell activation syndrome, POTS, Sjögren’s syndrome, lupus SLE, and a rare T-cell lymphoproliferative disorder. People reported that Halsey shared a health update while preparing for tour and referenced treatment connected to serious immune-related diagnoses.

Jameela Jamil

Jameela Jamil has spoken publicly about Ehlers-Danlos syndrome and the way it affects her body.

The actress and activist has used social media and interviews to address hypermobility, injuries, pain, and public misunderstanding. EDS awareness groups have also highlighted her openness as part of wider public conversation around the condition.

Yvie Oddly

Yvie Oddly, winner of RuPaul’s Drag Race season 11, has spoken about living with Ehlers-Danlos syndrome.

Their drag style is known for extreme flexibility, strange beauty, and physical risk. But Yvie has also explained that the same body that helps create powerful performances can cause pain, instability, and long-term difficulty. Yvie discussed chronic illness and the challenge of performing with a degenerative condition.

Venus Williams

Venus Williams revealed in 2011 that she had been diagnosed with Sjögren’s syndrome.

Sjögren’s is an autoimmune disease that can cause fatigue, joint pain, dry eyes, dry mouth, and other systemic symptoms. The Sjögren’s Foundation has highlighted Williams’ role in raising awareness, quoting her on the difficulty of being misdiagnosed and trying to keep playing professional tennis while symptoms worsened.

Robin Roberts

Robin Roberts has lived through serious public health challenges, including breast cancer and myelodysplastic syndrome.

Myelodysplastic syndrome, or MDS, is a rare blood and bone marrow disorder. Roberts announced in 2012 that she had been diagnosed with MDS and later received a bone marrow transplant with her sister as donor.

Kareem Abdul-Jabbar

Kareem Abdul-Jabbar revealed in 2009 that he had chronic myeloid leukemia, often called CML.

CML is a rare cancer of the blood and bone marrow. The University of Texas Health Science Center at San Antonio reported that Abdul-Jabbar had been taking medication for a rare form of leukemia diagnosed in 2008.

Tionne “T-Boz” Watkins

Tionne “T-Boz” Watkins of TLC has lived with sickle cell disease since childhood.

People reported that Watkins was diagnosed at age 7 and was once told she might not live past 30, have children, or live the life she wanted. Despite that, she became part of one of the most successful girl groups of the 1990s.

Prodigy

Prodigy, one half of the hip-hop duo Mobb Deep, lived with sickle cell anemia for most of his life.

The condition influenced his music, writing, and public story. PBS reported after his death that Prodigy’s life and music helped shine light on the slow progress against sickle cell disease.

Peter Dinklage

Peter Dinklage has achondroplasia, the most common form of dwarfism.

Achondroplasia is a genetic condition affecting bone growth. Medical and rare-disease education sources have noted that Dinklage, like his Game of Thrones character Tyrion Lannister, has achondroplasia.

Warwick Davis

Warwick Davis was born with spondyloepiphyseal dysplasia congenita.

Davis wrote in The Guardian that he was born with the rare genetic disorder and that doctors once gave his parents a bleak outlook. He went on to build a long career through Star Wars, Willow, Harry Potter, and many television projects.

Danny DeVito

Danny DeVito has a rare skeletal condition called multiple epiphyseal dysplasia, also known as Fairbank’s disease.

The condition affects bone growth and joint development. Recent entertainment and health coverage has identified DeVito’s short stature as connected to the rare genetic disorder.

Nick Vujicic

Nick Vujicic was born with tetra-amelia syndrome, a rare condition characterized by the absence of arms and legs.

Vujicic became known worldwide as a motivational speaker, author, and founder of Life Without Limbs. Some sources describe his condition as rare and central to the early challenges he faced.

Lizzie Velásquez

Lizzie Velásquez was born with an extremely rare congenital condition often described as Marfanoid-progeroid-lipodystrophy syndrome.

The condition prevents her from gaining weight in a typical way and has affected her appearance and vision. Velásquez became widely known after experiencing severe online bullying, then turned that painful attention into a career in motivational speaking and anti-bullying advocacy.

Amy Schumer

Amy Schumer revealed in 2024 that she had Cushing syndrome.

Cushing syndrome is a rare hormonal disorder linked to high cortisol levels. Schumer said she had been diagnosed after public comments about changes in her face led her to seek medical input.

Wendy Williams

Wendy Williams’ medical team announced in 2024 that she had been diagnosed with primary progressive aphasia and frontotemporal dementia.

Frontotemporal dementia, or FTD, is a rare neurological disorder that can affect language, behavior, personality, and cognition. The Associated Press described FTD as rare and explained that Williams’ diagnosis brought renewed attention to the condition.

Bruce Willis

Bruce Willis’ family first announced that he was stepping away from acting after an aphasia diagnosis. Later, they shared that his condition had progressed to frontotemporal dementia.

Boston University’s Center for Brain Recovery noted that Willis’ family revealed his FTD diagnosis after the initial aphasia announcement, helping bring public attention to primary progressive aphasia and frontotemporal dementia.

Michaela DePrince

Michaela DePrince lived with vitiligo, a skin condition that affected the way she was treated as a child.

DePrince’s life was about far more than a diagnosis. She became a symbol of resilience, beauty, and artistic achievement before her death in 2024 at age 29.