Meet the GILENYA Guides

Erin D.

College student and certified personal trainer

You were diagnosed at a young age. Did it impact your outlook for the future? Do you have a different perspective now?

After being diagnosed, I felt relieved. Having the knowledge of the condition was powerful and helped me to feel optimistic about the future. My positivity continues today.

  • Q. What does being a GILENYA Guide mean to you?
  • A.Being a GILENYA Guide means reaching others who may have or are currently struggling with things I experienced. I always hope others feel like they can relate to what I've faced so they don't feel alone. The scariest part is feeling alone. Being a Guide can mean inspiring someone... giving someone hope.
  • Q. What would you tell someone who's been recently diagnosed with relapsing MS?
  • A.I would tell them that they have a great support system within the MS community. The most important thing to keep in mind is that everything comes back to one's personal attitude.
  • Q. What was your reaction when learning about the baseline assessment tests and what the first dose observation (FDO) would be like?
  • A.I saw the tests as a positive obstacle to overcome because it meant I was that much closer to being on GILENYA.
  • Q. What was your first day on GILENYA like? What did you do to pass the time (during the 6-hour monitoring of the first-dose observation, or FDO)?
  • A.My first day on GILENYA was actually relaxing because I rarely get time to myself... so I used it as 'me time.' I read a book, watched movies, and I even got to have lunch with the receptionists in the doctor's office!
  • Q. What do you tell other people with relapsing MS?
  • A.Generally we trade stories, listen to each other's experiences with relapsing MS. By doing that, we're able to create a unique and powerful bond. Again, my mantra tends to be, 'It's all about the positive attitude.'
  • Q. What would you tell someone thinking about taking GILENYA?
  • A.I would say that it's important to do research on all relapsing MS treatments, talk to their doctor, and put a lot of thought into their treatment.
  • Q. How many relapses were you experiencing before you started GILENYA?
  • A.Two or three a year over a period of 5 years.
  • Q. How many relapses have you had since you started taking GILENYA?
  • A.Zero.
  • Q. Singer/songwriter and MS advocate David Osmond created a song to inspire others with relapsing MS. Do you have an "I Can Do This" moment?
  • A.I have 'I Can Do This' moments nearly every day ... it's a common occurrence because it needs to be. Good days, bad days, days when I feel limited ... choosing to have that moment is what's important.

*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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