Don’t believe everything that you read. MS is not a death sentence. There was a lot of publicity this week about Jack Osbourne’s onset of Multiple Sclerosis . While I feel bad for the Osbourne family, MS is hardly the death sentence that the article implies. In fact, I would go as far as to say that there has never been a better time in the history of the disease to have Multiple Sclerosis.
According to Zieve & Jasmin (2011), although the disorder is chronic and incurable, life expectancy can be normal or almost normal. Furthermore the same publication suggests that patients with MS can continue to work, walk and maintain a normal quality of life for twenty years or more.
However, the perception by the Osborne family and the staff at People Magazine is a perception that is shared by the majority of newly diagnosed patients that I meet. People are afraid of the unknown. In the case of the Osbourne’s, this is not the first time that MS has been a family scare. “Family unity became even more paramount for the Osbournes in 1992 when Ozzy was diagnosed as suffering from multiple sclerosis, announced his retirement and played a farewell tour. Six months later a second opinion pronounced the diagnosis a false alarm, but the family has only now publicly acknowledged the scare” (Gittins, 2001).
Given the experience with Ozzy in 1992, it is not surprising that in 2012 the Osbourne’s think that MS is a death sentence. Back in 1992, there wasn’t much that doctors could do for MS. Betaseron was approved for relapsing remitting MS and other interferon treatments were about to come to market. The message that I would send to the Osbourne’s is that science has come a long way in twenty years. There is plenty of hope on the horizon. For example, I have been on Tysabri since 2007 and have not had an MS relapse since. To see me today, you would not guess that I am a person living with MS. My hope is to spread the word that this disease is not a death sentence and to research the treatments available to help slow the progression of this horrible disease.
You can find the full People article about Jack’s diagnosis here: http://www.people.com/people/article/0,,20605555,00.html
References:
Gittins, I. (2001, May 25). Sharon osbourne tells ian gittins how she took a booze-soaked rock’n’roll has-been and turned him into a £40m industry The Guardian, Retrieved from http://www.guardian.co.uk/friday_review/story/0,3605,495951,00.html
Zieve, D., & Jasmin, L. (2011, September 26). National center for biotechnology information. Retrieved from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001747/
5 thoughts on “Reaction to Jack Osbourne’s Diagnosis – MS is not a death sentence.”
You make a good point about their experience with MS being the betaseron infusions of the past. New medicines like Tysrabi and Gilenya can and hopefully will keep people with MS relapse free for longer, and thus, limit the damage done over their lifetime.
Thanks for the response Philip! I’ve been on Tysabri since February of 2007, so I can attest to the efficacy. There are also new treatments in the pipeline, many on phase III of clinical trials. This includes the next oral pill – BG-12 (http://www.biogenidec.com/press_release_details.aspx?ID=5981&ReqId=1686377). As crazy as it sounds, there has never been a better time to be a patient with MS.
Great blog, Matt. You are right.. if you have to be diagnosed with MS, this is the time! Compared to 15, even 10 years ago, there are treatment options now that weren’t around then. I have been on Tysabri for over 4 years now and also have not had a relapse since I started the infusions. For people newly diagnosed with MS, it is very scary but once you learn about the disease, people realize MS is not death sentence!
Thank you for sharing Caroline! I have been on Tysabri since February of 2007 and been doing great! (Other than 2010’s cervical fusion, but that’s a blog for another day.) The newly diagnosed have options that we didn’t have when we were diagnosed. There is a lot of promise and hope in the MS community right now for the future. I plan on sticking around to see what the future holds.
Matt, thank you for making important clarifications regarding MS. Fighting the MS beast myself, I understand how fear and misunderstanding medical mumbo jumbo can fuel misconceptions. Through my war, I’ve learned MS “factual” info dispensed by physicians is NOT standardized.
I also am witnessing a precious friend agonizingly slip toward his impending PPMS-caused death every day. Bedridden with feeding tube and catheter, he suffers from paraplegia and is virtually speechless.
However, a small, lopsided smile can still be seen on his face … like in May 2012 when an MS Walk was held in my community. My (then) employer generously sponsored a team and I dedicated my walk to my precious friend. Around my neck hung a placard bearing his photo and when I was interviewed by a local television station anchor that morning, I explained my mission. That morning, my friend’s professional caregiver made sure he was watching the TV station’s walk coverage and saw a lopsided smile emerge. <3
Thank God the majority of MS patients are not as negatively impacted as my friend. As for what I've witnessed firsthand, proclaiming multiple sclerosis is NOT a death sentence is semantics, not reality.
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