Meet the GILENYA Guides

Colleen E.

Full-time marketing professional
Completed her MBA, has a first-degree black belt in tae kwon do and is a yoga instructor in training

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

I was at the gym one morning and I noticed some numbness and tingling in my index and pinky fingers. Over the course of a few weeks, the numbness intensified. It spread from my entire hand, to my arm, and down the front side of my body. I had several doctors' appointments and various tests to confirm my relapsing MS diagnosis.

  • Q. How did you react to your relapsing MS diagnosis?
  • A.I was shaken to my core. It was scary not knowing what I did to get this condition, or what I could do to stop it. I did not know what my future would look like. But I also felt a sense of relief. I finally understood what had been going on with my body.
  • Q. How has your attitude toward relapsing MS changed?
  • A.I am not afraid of relapsing MS any longer. And I think my fear has reduced for a few reasons. First and foremost, the treatment that I am on is working for me. Next, with time comes acceptance. It has been 8 years since the onset of my first symptoms. I now understand that there are ups and downs. I am able to fight through the lows and enjoy the highs.
  • Q. Where did you turn for support when you were first diagnosed? Where do you turn now?
  • A.When I was first diagnosed, my primary support was the family and friends around me. Now, I turn to the 9 GILENYA Guides that I met during a GILENYA event in LA for support. They are my MS family, and my primary support for anything related to relapsing MS.
  • Q. What would you tell someone who's been recently diagnosed with relapsing MS?
  • A.I would say that selecting the right medication is critical. You need to understand that options are available. Work with your doctors to find the right treatment plan for you. It is about management versus control. The highs and lows are going to come. But, how you manage them is going to be critical to how you manage this condition overall. It's a marathon, not a sprint.
  • Q. What ran through your mind as your doctor discussed the risks/side effects of taking GILENYA?
  • A.When my doctor reviewed the risks and side effects of taking GILENYA, it was a lot to process, but there is always a lot to consider when it comes to managing my MS. I was very thoughtful in my decision to switch medications, and I did my research, so after careful consideration, my doctor and I decided GILENYA was right for me.
  • Q. What was your reaction when learning about the baseline assessment tests and what the first dose observation (FDO) would be like?
  • A.I did my research and I understood the reason for the testing. I was a little anxious, but also hopeful. The possibility of not having to deal with the injections was greater than any anxiety that I felt about switching medications.
  • 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.During my first dose, I read a book, responded to e-mails, and I actually worked a little bit. My advice would be to bring your tablet and fire up Netflix. Watch some videos, listen to some music, or read to pass the time.
  • Q. Was there a difference between what you anticipated for the first day on GILENYA and what actually took place?
  • A.It was easier than what I anticipated. It was a very uneventful day for me.
  • Q. What does being a GILENYA Guide mean to you?
  • A.Going through the Guide training was one of the most empowering moments of my entire life. I went in not really knowing what to expect. And when I came out, I was able to talk about my condition in a way that I have never talked about it before. I can share my perspective on life, my relapsing MS, and how I deal with it in ways I never thought. It's so empowering to be part of the GILENYA Guide community!
  • Q. How many relapses were you experiencing before you started GILENYA?
  • A.1 to 2 relapses a year.
  • Q. How many relapses have you had since you started taking GILENYA?
  • A.Since starting GILENYA, I've had one relapse.
  • Q. What would you tell someone thinking about taking GILENYA?
  • A.Not every medication is right for every person. You have to weigh the risks and benefits and have a discussion with your doctor. I would encourage other relapsing MS patients to see if GILENYA would be a good option for them to try.
  • Q. How do you tell your relapsing MS, "HEY MS, Take This!"
  • A.I tell my relapsing MS, 'Hey MS, Take This!' every morning. I wake up at 6:00 AM for yoga 5 days a week. Some days, I wake up tired or fighting it, but I know that I can power through. My condition is not stopping me. MS may tell you that you can't do something—but I am using it as a way to say, 'I can!'
  • Q. In what ways, if any, has your journey with MS had a positive impact on your life?
  • A.My relapsing MS journey has been surprisingly positive. I was diagnosed with a chronic illness. But through the course of being diagnosed, accepting, and figuring out how to manage it, I realized that I am stronger than I ever imagined. Meeting other relapsing MS patients and other GILENYA Guides has been very empowering and reassuring. I want to dedicate more of my time to turning what could been seen as a negative into a positive.

*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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