Meet the GILENYA Guides

Deana T.

Wife and mother
Plans family vacations around visiting every Major League Baseball park in the country

How did you react to your relapsing MS diagnosis?

I was shocked! I went to the doctor because I thought I had a pinched nerve. It wasn't even anything on my radar!

  • Q. How did you go about finding a treatment for your relapsing MS?
  • A.My first MRI was ordered by a neurosurgeon, who is a family friend. He got me in with a great neurologist, who told me what medication he thought I needed to start.
  • Q. How has living with relapsing MS affected you?
  • A.I've been able to meet others with relapsing MS and hear their stories. I am the 'poster child' in my group of friends, who know me as the one with relapsing MS! Everyone that is newly diagnosed—or knows someone who is—gets referred to me for a chat! LOL.
  • Q. Where did you turn for support when you were first diagnosed? Where do you turn now?
  • A.I turned to the Internet for information but didn't have anyone to talk to about it who was also experiencing it. Social media has been so great to hook people up with others who also have it! And I LOVE my friends I met in Los Angeles at a GILENYA event!
  • Q. What would you tell someone who's been recently diagnosed with relapsing MS?
  • A.I actually do this all the time! (Like I said, I am the poster child.) I just share my experience and talk about all the medications that are out there and how great it is to take a pill now instead of an injection!
  • Q. Why did you and your health care professional choose to start GILENYA?
  • A.Because I hated the shots! The needles! I would push back the day I did it or skip a week because I dreaded it!
  • Q. How many relapses were you experiencing before you started GILENYA?
  • A.A couple a year.
  • Q. How many relapses have you had since you started taking GILENYA?
  • A.I've had one relapse since starting GILENYA. I got really sick for several weeks, and all that stress on my body brought a relapse on.
  • 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 husband, Bobby, went with me. I brought magazines and DVDs. Bobby went to get us lunch. Kind of boring!
  • Q. Was there a difference between what you anticipated for the first day on GILENYA and what actually took place?
  • A.I was a little nervous about that fifth hour, but it came and went. Then I got to go home!
  • Q. What does being a GILENYA Guide mean to you?
  • A.It means I get to share my story and meet great people all over the country! (Have I mentioned that I LOVE my friends I met in LA?)
  • 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 love that song! Yes! I push myself all the time! It's not a 'moment'; it's a lifestyle!
  • Q. In what ways, if any, has your journey with relapsing MS had a positive impact on your life?
  • A.There are too many to count! A closer relationship with God, being able to see how many people care about me, meeting so many great people who are living with MS recently diagnosed, people I speak to during my talks, and being able to share my story through GILENYA!

*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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