Celebrities With MS

Recently it was announced that Jack Osbourne has Multiple Sclerosis.  I am sorry to hear that he has MS, but I am glad that he has shared his diagnosis with the world and is bringing attention to MS.

Unfortunately, the media has dramatized Jack Osbourne’s diagnosis and there is a lot of misinformation given. For example, on the cover of People magazine, Sharon Osbourne, Jack’s mother, is being quoted saying “I’m Not Going to Let My Son Die!”  As we know, people with MS have long, fulfilling lives and Jack Osbourne along with all of us, are not in danger of dying anytime soon.  It is such a shame that is what People magazine decided to focus on for their cover. However, the article in the magazine, I thought was well written and brought the right kind of awareness to MS.

When I was first diagnosed with MS in 2006 I turned to books to learn about MS and found that there were many autobiographies of celebrities with MS. I read about Terri Garr, Montel Williams and David Lander aka “Squiggy.” Nancy Davis brings awareness to MS in a different way. Every year she hosts the Race to Erase MS Gala.  A lot of celebrities attend and therefore media attention is brought to the event. The Gala recently took place and I saw clips of it on some entertainment shows. Nancy Davis raises money to help end MS and I hope that with the new attention Jack Osbourne has brought to MS, that this year there will be even more support to help end MS and that there may even be a cure in my lifetime!

Tysabri - My MS Therapy

I switched my MS therapy to Tysabri in 2008.  I had been on Avonex for a year and a half and finally had found somewhat of a routine with the weekly shots.  I became more comfortable after finding out about a prescription numbing cream (see blog #2 “Miracle Cream”) and slowly had less and less side effects. After getting MRI results, my neurologist informed me that Avonex was no longer working for me.
I had a couple options, the ones I was considering were Copaxone, a daily injection or Tysabri, a monthly infusion. I was fairly certain that I would go with Tysabri, just because I found out after being diagnosed with MS that I had a needle phobia. I really couldn’t see myself getting a shot every day. Also, at this point Abe, my husband, had to give me my shots and I didn’t want to have to depend on him or anyone else for them. I knew I wouldn’t be able to give myself the injections either.

I was a little nervous about starting on Tysabri.  It had been taken off the market at one point as a handful of people had developed PML, a rare brain infection that can leave you in vegetative state or be fatal.  My neurologist informed me that I would be closely monitored. I felt comfortable with the decision to start Tysabri and scheduled my first infusion.

I have now been on Tysabri for over 4 years. I am so thankful I made this choice.  Within the last year there has been a blood test that can detect if you have been exposed to the JC Virus, which puts you at risk for PML.  The last two years I have tested negative. For me, Tysabri has worked so well. Not only is my quality of life been better because I no longer have to worry about shots (as soon as the shot was over, I started having anxiety about the next shot) but I haven’t had a relapse since my first infusion!