When I wrote about celebrities with CML, I was writing about a diagnosis I live with. Looking beyond CML, people such as Céline Dion, Gaten Matarazzo and Tionne “T-Boz” Watkins show how a familiar name can make an unfamiliar disease easier to discuss.
A name you recognise gives you somewhere to begin. You might learn what the condition is called, understand why someone has cancelled a performance, or find language for a conversation you have been struggling to have.
I wanted to follow that recognition a little further. What do these public accounts help us understand about the people around us? About the colleague whose energy changes, the friend who keeps rearranging plans, or the person trying to explain a diagnosis nobody has heard of?
The ten accounts below draw on what people, or their families, have chosen to share. They describe particular moments in those lives. An announcement from 2018 or 2022 cannot tell us how somebody feels today, and a successful performance cannot tell us what it took to get through the day.
What counts as a rare disease?
“Rare” has a specific meaning in health policy, and the definition depends on where you live. In the United States, the FDA uses a threshold of fewer than 200,000 people. In the European Union, a disease is considered rare when it affects fewer than five people in 10,000.
The word describes how frequently a condition occurs in a population. It tells you very little about how much pain someone is in, whether they can work, or what care they need. Chronic illness describes duration; plenty of chronic conditions are common.
Geography matters, too. Sickle cell disease affects roughly 100,000 people in the United States and millions worldwide. Calling it rare in an American context should never make those millions disappear.
When illness changes the work people know you for
Céline Dion: stiff-person syndrome
Céline Dion publicly disclosed stiff-person syndrome in December 2022. For an audience accustomed to hearing her sing, the announcement introduced a condition many had never encountered.
Stiff-person syndrome is a rare neurological disorder involving muscle stiffness and painful spasms. Symptoms can be triggered by stimuli such as noise or touch, and their effects vary between people.
Knowing that much changes how we might understand a cancelled show or a request for a quieter environment. It also gives us a reason to reconsider how we judge somebody's capacity from a brief public appearance. Singing on one occasion does not provide an audience with a medical assessment.
Peter Frampton: inclusion body myositis
For a guitarist, changes in muscle strength can affect the work itself. Peter Frampton has spoken about living with inclusion body myositis, or IBM, and helped establish a research fund at Johns Hopkins, announced publicly in 2019.
IBM is a rare muscle disease that causes progressive weakness. It can affect everyday tasks as well as highly practised skills: getting out of a chair, walking or using the hands.
In the Johns Hopkins account, Frampton recalls meeting a man who recognised his own unexplained symptoms in a television interview and subsequently sought a neurologist. A public story had given him language to take into a medical appointment. That is a useful form of recognition.
Samantha Ruth Prabhu: myositis
Actor Samantha Ruth Prabhu disclosed an autoimmune condition she called myositis in October 2022. In that statement, she described good days and bad days and said she had hoped to discuss it after reaching remission.
Myositis covers a group of rare conditions affecting muscles. Weakness can make stairs, lifting and getting up difficult. Different forms have different features; Samantha's announcement should not be used to guess a more specific subtype.
Her account also leaves room for something easily lost in a public recovery story: uncertainty. People may need to explain an absence while still working out what their diagnosis means. They should be able to say that they do not yet know when things will improve.
Finding language for an experience others cannot see
Gaten Matarazzo: cleidocranial dysplasia
Stranger Things actor Gaten Matarazzo has spoken openly about cleidocranial dysplasia, or CCD. In his account for CCD Smiles, he describes having a milder form of the condition and wanting people to be able to talk about it without shame.
CCD affects the development of bones and teeth. Its effects differ, including within the same family. One person's appearance or treatment history cannot stand for everyone with the diagnosis.
The organisation Matarazzo supports also draws attention to the practical side of recognition. CCD Smiles founder Kelly Wosnik describes the difficulty of obtaining coverage for treatment that falls between medical and dental insurance. Learning a condition's name is useful. Understanding why necessary care can be difficult to pay for takes that knowledge further.
Emily V. Gordon: common variable immunodeficiency
Writer and producer Emily V. Gordon has discussed common variable immunodeficiency, or CVID, including in a 2023 conversation with the Immune Deficiency Foundation about health, work and managing limitations.
Whoever named CVID did public understanding few favours. The “common” in the name can be confusing. CVID is one of the more frequently diagnosed primary immunodeficiencies, but it remains rare in the wider population. People with CVID have low levels of antibodies and can experience recurrent infections and other complications.
Much of the work of managing an immune condition happens outside other people's view. A person may be planning around infection risk, appointments or fatigue while appearing entirely well. Our guide to invisible disability explores why appearance offers such an unreliable guide to somebody's needs.
Tionne “T-Boz” Watkins: sickle cell disease
TLC singer Tionne “T-Boz” Watkins has spoken for years about sickle cell disease. In a first-person account published in 2018, she described hospital stays, missed work and the difference that being able to afford healthcare made to her life.
Sickle cell disease is a group of inherited blood disorders. Abnormally shaped red blood cells can obstruct blood flow, causing pain and serious complications. It can affect someone whose energy and presence on stage give an audience no indication of those difficulties.
Watkins's account brings money into the conversation. Time away from work, access to clinicians and help during an illness all have material consequences. A famous person's experience can make a disease more recognisable while also showing why another person with the same diagnosis may have far fewer options.
What a diagnosis helps people understand
Bruce Willis: frontotemporal dementia
In February 2023, Bruce Willis's family announced a more specific diagnosis of frontotemporal dementia, following the disclosure of aphasia in 2022.
That sequence needs careful wording. Aphasia describes difficulty with language. The family explained that FTD provided a clearer account of his condition; saying that aphasia simply “turned into” dementia misrepresents the relationship between a symptom and a diagnosis.
Frontotemporal disorders can affect language, behaviour, movement and other functions, depending on the form involved. The family's statement asked for greater awareness and research. It also offers a useful starting point for understanding why a change in communication may require patience, different ways of connecting and support for the whole family.
Justin Bieber: Ramsay Hunt syndrome
In a June 2022 video, Justin Bieber explained that Ramsay Hunt syndrome had affected movement on one side of his face. He showed the difficulty he was having with blinking and smiling while explaining why he could not perform.
Ramsay Hunt syndrome is linked to reactivation of the varicella-zoster virus, the virus that causes chickenpox and shingles. It can affect a facial nerve and may involve hearing or balance problems. His video made one particular experience visible. It did not establish a timetable for anybody else's recovery, or even provide a continuing account of his own symptoms. When an old disclosure recirculates, its date deserves as much attention as its headline.
Keala Settle: moyamoya disease
Keala Settle told People in 2018 that a transient ischaemic attack shortly before her Oscars performance led to a diagnosis of moyamoya disease. She underwent brain surgery in April, after the performance.
Moyamoya disease involves narrowing of arteries that supply blood to the brain and can lead to strokes or transient ischaemic attacks.
Settle's account is often remembered alongside an extraordinary performance. I am more interested in what an audience could not know at the time. Being able to do something demanding can coexist with being seriously unwell. Applause tells us very little about the care a person needs afterwards.
When awareness leads to something people can use
Robin Roberts: myelodysplastic syndrome
Robin Roberts announced a diagnosis of myelodysplastic syndrome in 2012 and received a blood stem cell transplant from her sister Sally-Ann that September.
Myelodysplastic syndromes are a group of cancers in which the bone marrow does not make enough healthy blood cells. MDS and CML are different diagnoses, even though both belong in conversations about blood cancer.
Roberts used the attention around her experience to encourage people to learn about stem cell donation. In its 2022 account of working with her, NMDP, then known as Be The Match, reported that tens of thousands of people had joined the registry through the awareness she helped generate. That gives awareness a concrete consequence: more potential donors for people who need a match.
Celebrity accounts can help us find organisations, research and communities we might otherwise never encounter. The next step is to listen to people whose lives receive much less attention.
A EURORDIS Rare Barometer report published in April 2025 examined responses from 9,591 people with rare diseases and family members across Europe. More than half of respondents reported that the person with the rare disease had experienced discrimination because of their disease or disability. The survey also documented difficulties obtaining disability recognition and support.
This was an online survey recruited through patient networks and other channels, so its findings should not be treated as a count of everyone's experience. It does, however, direct attention to questions that a diagnosis announcement cannot answer. Can someone get the assistance they need? Will their employer accommodate a changing capacity? Does a service recognise a disability that is difficult to see?
Carry the understanding into an ordinary conversation
You do not need to remember all ten diagnoses to respond more thoughtfully when someone tells you about theirs.
- Let them describe their own experience. Knowing a celebrity with the same condition gives you a reference point. Ask what it means for the person in front of you.
- Make room for plans to change. Offer a shorter visit, a different time or an easy way to cancel. Ask which option would help.
- Offer something specific. A meal, a lift or help with an errand is easier to consider than an open-ended request to tell you what to do. Accept a no.
- Keep medical suggestions in proportion. A celebrity's treatment or routine is an individual account, not evidence that it would suit someone else. Sharing an article does not need to come with instructions.
- Keep including them. Someone who misses several invitations may still want to receive the next one. Ask how they would like to stay in touch.
Writing about CML made me interested in what recognition can do. A familiar face may help someone learn a disease's name. I hope the understanding lasts long enough to reach the friend who needs to leave early, the colleague asking for a change, or the person who has already explained their illness several times and would appreciate being believed.
