When first diagnosed with Sjogren’s Syndrome in 2002, I sought out information and support on-line, quickly discovering a list-serve e-mail message group of patients. The group, including a couple physicians who had the illness and a very well-informed dental hygienist, were a wealth of knowledge. More recently I have joined a couple Facebook groups for the same reasons – information sharing and support.
Back in the early 2000s there was a recurring wish among the people involved in the Sjogren’s e-mail message group. Though no one would wish Sjogren’s upon anyone, there was a hope that eventually a celebrity would be diagnosed with it. Someone who was a “household name” who would come forward publicly, speak about the illness to mass media, hence creating public awareness in a way no one else, including the Sjogren’s Syndrome Foundation, could possibly hope to do.
One only need think of Michael J. Fox’s impact on Parkinson’s disease awareness to understand why so many patients had this wish. Well, it did come true. But in a certain sense it was almost a case of “be careful what you wish for”.
In 2011, Venus Williams pulled out of a major international tennis tournament, shortly after that she went public with her diagnosis of Sjogren’s. Like most patients, she described asking the doctor about her initial symptom – fatigue – numerous times only to continue to be undiagnosed for a few years until she had multiple symptoms that made it clear what she was suffering from.
This month a Dr. affiliated with the Sjogren’s foundation in the USA was interviewed on a TV news program; he mentioned Venus has a “mild case” of Sjogren’s. Being an international Olympic calibre athlete, I believe no one will be privy to Venus’s specific symptoms or treatment (no standardized treatment protocol currently exists) until after she retires. Fortunately for her, she has been able to return to elite competition albeit by reducing her schedule of tournament play.
At last, there was a celebrity face to “our disease”. The mixed blessing of Venus’s diagnosis became clear to me upon hearing people, including physicians say: “Sjogren’s, that’s nothing, Venus Williams has that and she still plays tennis.”
(You don’t know how much I want to punch a Dr’s lights out when I hear that. It ranks right up there with “if your mouth is dry just drink more water” or “if you are so tired maybe you should get more sleep.” If only it was that simple.)
Awareness of the name Sjogren’s Syndrome was created, but obviously what also came with Venus’ disclosure of her diagnosis was more misunderstanding of how severe the illness could be.
The irony of physicians making comment of Sjogren’s not being “that bad” because of Venus, is they are often the very same ones who tell us the reason we have the symptoms we do is because we are out of shape and need to exercise more. Argh! There is no one who was / is in better shape than Venus Williams, yet she still struggled with fatigue, and pain. She did not have the symptoms because she was “de-conditioned”; she had them because of the illness.
More recently, Carrie Ann Inaba, a judge on “Dancing With the Stars”, revealed she too has Sjogren’s. Like Venus, and a huge majority of Sjogren’s sufferers she too went to her Dr. with initial complaints of what she described as “incredible and random fatigue”. Carrie is on a common treatment for the disease called “Plaquenil” which is actually an old anti-malarial drug that was accidently discovered to help with certain auto-immune diseases including Sjogren’s and Lupus. Carrie Ann has become the Sjogren’s Syndrome Foundation Awareness Ambassador and Spokesperson.
I’m glad Venus and Carrie Ann came forward to create awareness, though there are people who will always judge their friends, family, or patients who have Sjogren’s based on what they know of the celebrities. Just like Lupus is considered the disease of a “thousand faces” because every patient can have such a unique constellation of symptoms and disease progression, so too does Sjogren’s.
One must also remember the resources the celebrities may have to help them cope with Sjogren’s are probably not those of the “average” patient. As one friend originally from Europe said to me: “I bet Venus has the best doctors in the world, probably in Switzerland.” Guaranteed she has the best medical team, wherever they might be located.
My husband once asked me how I could possibly spend 60 million if I won the largest Canadian lottery prize. I did not hesitate even a second before replying: “I’d hire staff.” And indeed I would, just like I’m sure Carrie Ann and Venus have. Coping with Sjogren’s would be so much easier if I had my own housekeeper, chef, driver, massage therapist, personal trainer, physiotherapist, personal assistant…