I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.
Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the
National MS Society website:
In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.
Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.
Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.
Excuse me?
Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is
not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:
Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)
Also, in the
Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:
Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) MS-related causes had a younger age at disease onset (32.5) compared with those dying of unrelated causes (36.8 years) (p = 0.01). Cause of death was related to MS in 57.9% and unrelated in 42.1% of individuals. In 27% of patients, "MS" was absent from the death certificate. The most common cause of death was respiratory disease (47.5%). The standardised mortality ratio was 2.79 (95% CI 2.44 to 3.18) so that MS patients were almost three times more likely to die prematurely relative to the general population.
I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.
I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the
real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.
Is some MS education, even incorrect, better than none at all? Please post your thoughts.
Peace,
Kelley
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