09/07/2012 01:04 pm ET Updated Nov 07, 2012

Another Tricky Case of Celebrity Illness: Robin Roberts

As the author of When Illness Goes Public, a book on celebrity patients, I strongly doubt that Good Morning America television co-host Robin Roberts' ongoing discussion of her myelodysplastic syndrome is, as one Internet commentator has written, a "self-serving ratings grab."

Being severely ill is a painful physical and mental process, even if your celebrity status can garner you thousands, and even millions, of well-wishers. And the growing propensity for famous people to "go public" with their diagnoses reflects an almost insatiable desire for information by the media and its readership. Still, Ms. Roberts' case, like others in the past, raises some important pitfalls for patients, their families and the general public.

People tend to associate the beginnings of "celebrity illness" with Betty Ford's disclosure of her breast cancer and radical mastectomy in 1974, but famous people had gone public for decades before -- willingly or unwillingly. For example, newspapers across the country gave front-page coverage to Lou Gehrig's 1939 diagnosis of amyotrophic lateral sclerosis, providing extensive details about the disease's symptoms and progression.[1] The photographer Margaret Bourke-White allowed herself to be photographed for a Life magazine spread after undergoing invasive neurosurgery for her Parkinson's disease in 1959.[2] Shirley Temple Black actually went public with her diagnosis of breast cancer in 1973, over a year before Mrs. Ford.[3]

Still, it was the first lady's candor and grace in the face of a devastating diagnosis that has made her breast cancer a landmark event in the history of celebrity illness. Her insistence that women get mammograms to diagnose early-stage breast cancers led to the famous "Betty Ford blip," an actual increase in the incidence of disease diagnoses thanks to women who had followed her advice.

Over the years, disclosure of illness by the famous has almost become de rigueur. Indeed, when television journalist Ed Bradley died of a rare form of leukemia in 2006, some upbraided him for keeping his diagnosis a secret. Yet it can reasonably be argued that aside from politicians, other sick celebrities are under no obligation to disclose information.

Not only are celebrities being more candid about their diagnoses, they are also in some cases giving in-depth details about their diseases and treatments. For example, Lance Armstrong described in depth how he chose a particular chemotherapy regimen for treatment of his widespread testicular cancer.[4] Farrah Fawcett participated in a documentary about her efforts to get unconventional treatment of her anal cancer in Germany.

But this growing tendency of celebrities to reveal details raises an important red flag. It is exceedingly rare for them to actually provide enough specific information about their illnesses for outside observers -- whether physicians or other patients -- to draw meaningful conclusions about their particular cases. For instance, although many celebrities have gone public with their diagnoses of prostate cancer and advocated prostate-specific antigen (PSA) screening, few have released their PSA scores.

Nevertheless, sick people may assume that because famous patients have access to the best doctors, that they should simply emulate what celebrities do. As one woman with Parkinson's disease wrote of the actor Michael J. Fox: "I just tried to follow right behind him and step in the footprints and do as much as I knew how to in terms of keeping a positive attitude."[5]

Thus, in Ms. Roberts' case, we have learned that her myelodysplastic syndrome, a pre-leukemic state in which the body's cell counts are dangerously low, resulted from her treatment for breast cancer five years ago. And we know that her sister, Sally Ann Roberts, who is generously donating bone marrow so that Ms. Roberts can receive a potentially curative transplant, is a "perfect match." Ms. Roberts, who took leave from Good Morning America last week and then flew to Mississippi to be with her dying mother, will undergo the procedure in New York next week.

But what has been discussed less is that the only true perfect match is from an identical twin. While Sally Ann Roberts probably has a tissue type that matches at three or more locations on a particular gene, her sister still will need to take immunosuppressive agents to avoid tissue rejection. And even when the match is good, as in this case, transplantation is an arduous procedure that leaves patients weak and very vulnerable to infection. Also not discussed in Ms. Roberts' case have been other prognostic factors, captured in the International Prognostic Scoring System, that help doctors estimate the likelihood that a given patient will be cured by his or her transplant.

When Robin Roberts announced in June, "My doctors tell me I'm going to beat this, and I know it's true," it was hard not to be moved. This is her second bout of serious illness. She is relentlessly upbeat and sincerely motivated to help find donors for other patients with myelodysplastic syndrome.

But let's take her case for what it is: one example of a notoriously complicated disease about which we still have much to learn.

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[1] Rud Rennie, "Gehrig Has Infantile Paralysis; Can Never Play Baseball Again, New York Herald-Tribune, 6/22/39

"Lou Gehrig Has Paralysis, Career with Yanks Ends," Cleveland News, June 22, 1939.

[2] Margaret Bourke-White, "Famous Lady's Indomitable Fight," Life, 6/22/59, pp. 102-109.

[3] Shirley Temple Black, "Don't Sit at Home and Be Afraid," McCall's, 2/73, pp. 82-83, 114-116.

[4] Lance Armstrong, It's Not About the Bike: My Journey Back to Life, p. 105.

[5] "Michael J. Fox: Miracle Cure!" Star magazine, 3/29/04. Quoted in "When Illness Goes Public" on p. 272.