Meet the GILENYA Guides

SHAWN F.

An outdoor and art enthusiast.

How did you find out you had relapsing multiple sclerosis (MS)?

I was in New York shopping for my wedding dress when I noticed my vision was off and my hands were tingling. I saw my ophthalmologist, who suspected I had optic neuritis and sent me to another ophthalmologist who conducted an MRI. Not too long after, the ophthalmologist left me a voicemail informing me I had relapsing MS. Shocked, I decided to seek out a second opinion from a neurologist who confirmed my relapsing MS diagnosis after performing a spinal tap.

  • Q. How did things go after your relapsing MS diagnosis?
  • A.I wasn't sure what this meant for me, my future, and the active lifestyle I was accustomed to. It really took the wind out of my sails. I abandoned my training regimen and shut my fiancé out for a time. I just felt completely off track. It was like I was grieving the loss of the life I knew. I really struggled following my diagnosis. I would experience about 1 relapse per year.
  • Q. How did you go about finding a treatment for your relapsing MS?
  • A.My doctor provided a list of medications available and we chose what, at the time, I thought would fit best with my lifestyle. I stuck with it as long as I could, but I struggled to take it consistently due to the pain of the injections.
  • Q. What do you tell other people with relapsing MS?
  • A.Relapsing MS is not the end of the world, there are ways to cope. It won't look the same for all of us, just like our relapsing MS isn't the same—but we can all persevere and pursue the life we deserve.
  • Q. What's different about living with relapsing MS?
  • A.I know I have limitations, but I am determined to continue living my life, which for me includes hiking and other outdoor activities. Looking back, I used to focus on the limitations relapsing MS placed on my life. Because I have had fewer relapses, I have more time to spend on my hobbies.
  • Q. Why did you choose GILENYA as a relapsing MS treatment?
  • A.I try to stay up-to-date on treatment options—and because it was an oral medication, I was particularly interested in GILENYA. It works well for my active lifestyle.
  • Q. Why did you choose to become a GILENYA Guide?
  • A.I believe that we all have our own challenges and limitations, but I hope I can encourage others living with this condition to find the strength to keep moving forward and embark on their own positive journey with relapsing MS.

*GILENYA can result in a slow heart rate when first taken. You will be observed by a health care professional for at least 6 hours after you take your first dose. You may need to repeat this monitoring if you miss a dose or are a child who is moving to 0.5 mg from the 0.25 mg dose.

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Speak up and share your message. Tell multiple sclerosis (MS) how you really feel by posting your message on our "HEY MS" message board.

Make sure your voice is heard. We love that you want to say "Take This!" to relapsing MS, but there are still some words even we can't use—words that might not be appropriate. They're defined in the Community Guidelines below. But have no fear; we'll give you a heads up if you use any problematic words by highlighting them after you hit submit. So, go for it, and tell relapsing MS how you really feel!

  • Do not include medical advice or any non-approved use of GILENYA

  • No profane, indecent, or inappropriate language in your message or image, please (a no-no)

  • Avoid using your full name and/or e-mail address in your message, so this personal information remains private and protected

  • Do not include spam, such as links to or URLs for other websites or social networks in your message

  • Refrain from sharing any treatment and/or dosage information, as well as names of specific medicines (brand name or generic) and product manufacturers

  • Avoid mention of side effects from GILENYA. We take drug product safety seriously. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call
    1-800-FDA-1088

Please note that in order to comply with our Community Guidelines as well as the FDA's Prescription Drug Advertising Guidelines, your statement may be subject to modification, while maintaining the spirit of your message. Your photo and statement may be used in other GILENYA marketing materials

 
 

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