Researchers estimate that there are as many as 38 new cases of Chronic Facial Pain* in every 100,000 people annually.1
Researchers also estimate that within a population of 100,000 people, there are 13 new cases of Parkinsons Disease annually.2
Therefore, Chronic Facial Pain happens to nearly 3 times as many people as Parkinsons in a given year.
Wait…what?
Does that surprise you? Because it surprised the heck out of me. It makes me wonder things like: how many of those 100,000 people are familiar with Chronic Facial Pain? And how does that compare to how many are familiar with Parkinsons. Maybe it’s just me, but it seems that there is enormous disparity in the incidence/awareness ratios of Chronic Facial Pain and Parkinsons, and probably others. There is a bevy of better known medical conditions that occur in fewer people.
What happens when one of those 38 people in 100,000 goes to the ER with a terrifying, blindingly painful flare up of undiagnosed Chronic Facial Pain?
When Carol Pace suggested that her husband [Kim] might be suffering from TN during an emergency room visit in late May, a doctor dismissively told her, “Don’t look for zebras,” medical parlance for a rare disorder. In his notes he wrote that Pace “has been on every SSRI known to man” referring to a class of antidepressants, and that lab tests showed the presence of benzodiazepines, often-abused tranquilizers “the significance of [which] is unknown.” But the same records show that Pace had told the doctor he was taking Xanax, a benzodiazepine prescribed by a doctor to help manage his pain.
The couple say that the doctor’s dismissive attitude and his insinuation that Pace was either crazy or a drug seeker was the last straw, reinforcing their view that he needed to find care elsewhere. Doctors in their home town seemed unable or unwilling to help.
–The Washington Post, “He couldn’t eat, drink or work. And doctors couldn’t explain his searing pain.“
“Go away, insane drug abuser.”
Chronic Facial Pain patients can relate to the above in a deeply personal way. This experience plays out, almost as if scripted, in ER’s all over the country on a daily basis. Undiagnosed and diagnosed patients alike suffer in agony due to medical professional ignorance. Not malfeasance, not stupidity – ignorance.
A serious and credible campaign to raise Chronic Facial Pain awareness is overdue and frankly, you deserve better! Ignorance stands no chance against awareness, education, and advocacy. By reaching out to the medical community with information about Chronic Facial Pain and providing resources for educating physicians and their patients, The Facial Pain Advocacy Alliance hopes to make this epidemic of ignorance a thing of the past.
You can help! Please share our website with your family, friends, and physicians so they can become better informed about your condition. If just one person can be spared Kim Pace’s all too common experience as a result of reading Face Facts, we will have achieved something…but our goal is that no Chronic Facial Pain patient ever has to endure this experience again!
* In The cited study, “Chronic Facial Pain” included Trigeminal neuralgia, postherpetic neuralgia, cluster headache, occipital neuralgia, local neuralgia, atypical facial pain, glossopharyngeal neuralgia and paroxysmal hemicrania.
1. Koopman JS, Dieleman JP, Huygen FJ, de Mos M, Martin CG, Sturkenboom MC. Incidence of facial pain in the general population. Pain. 2009 Dec 15;147(1-3):122-7. doi: 10.1016/j.pain.2009.08.023. Epub 2009 Sep 26.↩
2. Stephen K. Van Den Eeden, Caroline M. Tanner, Allan L. Bernstein, Robin D. Fross, Amethyst Leimpeter1, Daniel A. Bloch and Lorene M. Nelson . Incidence of Parkinson’s Disease: Variation by Age, Gender, and Race/Ethnicity. Am. J. Epidemiol. (2003) 157 (11): 1015-1022. doi: 10.1093/aje/kwg068. ↩