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A Message from Gilead

We are truly grateful to have had the opportunity to work with the remarkable Claire Wineland on this article. Claire passed away on September 2, 2018. Those of you who followed Claire's journey know that having cystic fibrosis (CF) did not define her, but it did help her find her purpose. Through her videos and public speaking engagements, Claire spent much of her life "breaking down barriers and helping others understand the reality of living with a chronic illness" in her totally fearless, always genuine, and occasionally irreverent way. She also founded Claire's Place Foundation to help children and young adults diagnosed with CF, as well as their families.

Claire's willingness to take on this project and dedicate her precious time and energy despite her health challenges was a great gift. Her loved ones encouraged us to continue to share Claire's important message, even if it comes with a heavy heart. You have left an indelible mark on this world, Claire. We will carry your words, your wisdom, and your memory with us—always.

Keeping Up With Your CF Care | My Cayston Community™

Claire Wineland

CF care is not very glamorous. I explain it to others like this:

  • Think about a recent day that you were not feeling well
  • Imagine having to go to work and keep up with your normal routine while you were feeling that way
  • Then think about having to fit in hours of treatments (which you need to do every single day)
  • And to top it all off, imagine knowing that the number of treatments and medications that you have to take may grow over time

The truth is that CF is hard work. It's easy to get caught up in the demands of managing it. I've found that I can prioritize staying on track with my treatment regimen if I think about it this way—doing my therapies as prescribed is a top priority if I want to continue to do the things that I love to do.

I have a very busy schedule because I travel a lot for work. Feeling tired or sick is always a big obstacle to being compliant. Making sure that I have all my medications in stock and don't run out is a constant struggle. I am on a first-name basis with the pharmacist assigned to my care, because it requires so much time to stay on top of all the medications and treatments that I have to take.

Even though keeping up with my treatment schedule can be infuriating sometimes, I feel that being adherent to my treatment plan is a source of power that I have over my illness.

But, when I don't take my medications and treatments as prescribed, I feel the effects and am unable to stick to my day-to-day routine. I don't like feeling trapped by this illness. Even though keeping up with my treatment schedule can be infuriating sometimes, I feel that being adherent to my treatment plan is a source of power that I have over my illness.

I have learned after many years of trying to be overly strict and failing miserably that the best way to go about setting a treatment routine is to first plan out your life, and then add in the medications. So, for treatments like CAYSTON that need to be taken multiple times per day, I find it helpful to understand any requirements about how much time needs to elapse between doses and use that information to identify times that I can make it work in my schedule. For CAYSTON, you have to wait at least 4 hours between each of the 3 doses. So, if I end up choosing to do my morning treatments at 11 am instead of 8 am, I can still easily find a way to fit in the 2 additional treatments later in the day.

My family and my best friend have also been a huge support to me. It's so important to let other people help you shoulder the load of this illness. My parents used to play games with me when I was young during treatment time so that I would be encouraged to do them and to keep treatment time from being horribly boring.

The fact is that it can be hard to fit in all of my treatments. I am driven by my passion for breaking down barriers and helping others understand the reality of living each day with a chronic illness. This is my purpose. It makes doing the hard work sometimes associated with managing this disease worthwhile.