When we think of a puzzle, most often we envision an entertaining activity. The activity of pouring out a specific number of graphics-applied cardboard shapes which, when put together correctly, will create the desired big picture. Puzzles also exist in many areas of our everyday lives..such as serious mathematical or logistical problems, and yes.. particularly in medical research. Such is the case for Sjogren’s Syndrome.
To solve a puzzle it is necessary to be able to recognize patterns and create a particular order. Putting the puzzle of Sjogren’s together is a challenge for researchers, physicians and patients. According to the Sjogren’s Syndrome Foundation the average time it takes to diagnose a patient with Sjogren’s is seven years. For many of us, it is much longer than that. Why is that? It is because Sjogren’s is often undiagnosed or misdiagnosed. The symptoms of Sjogren’s syndrome may mimic those of menopause, drug side effects, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome and multiple sclerosis. Additionally, all symptoms are not always present at the same time…kind of like when my car is messing up, but by the time I get it to the repair shop, the symptoms have disappeared.
Like many Sjogren’s patients I am searching for answers. Not only are we as a group relying on our physicians to fit the big puzzle pieces about Sjogren’s Syndrome together, we are also trying to figure out our own individual puzzle pieces. Since discovering the Sjogren’s Syndrome Forums for patients to communicate and share with each other, I have decided that self-advocacy and shared patient information is a core ingredient to solving the Sjogren’s Syndrome puzzle. About five or so years ago, I was treated with a medication prescribed for Osteopenia/Osteoporosis that included bisphosphonates and had a disastrous effect on my body (and I would even argue had a severe impact on my current autoimmune problems..but that’s another soapbox). I decided to research the drug (after the fact), I came across a web site called: AskAPatient.com The site lists various drugs from A to Z. Random people like you & me who do not know each other, simply complete a short survey about the specific drug we are/were prescribed, length of time taken; and any side effects (either positive or negative). While the sample may be small, it should not be dismissed as anecdotal. Imagine my shock when I realized that over 1400 people had taken the drug I was on & the majority of them had previously or currently were experiencing horrible, temporary and lasting side effects from the drug (and other similar drugs in the same bisphosphonate family). I was first upset at myself for not finding the site before I took the drug, but even more upset that the drug (while it does have current FDA warnings) is still on the market. But equally as important are the implications of patient/advocacy sites such as Ask A Patient and the Sjogren’s (and other) Forums. In fact, an article published in the Archives of Internal Medicine (Vol. 169, No. 12, June 22, 2009) Patient and Physician Oriented Web Sites and Drug Surveillance indicates that these kind of patient oriented sites provide an opportunity to identify potential adverse effects early in a drug’s postmarket history. I would argue that patient-sharing sites offer valuable insights and information to the Sjogren’s patient’s experience and symptomology, not only for the physician and researcher, but especially to the patient! Information sharing..whether in a formal testing protocol or on an informal discussion forum may surely be the key to help solve the Sjogren’s Syndrome Puzzle.