KALYDECO® Stories

Hear from the KALYDECO community

Brody

Age 21 months, G551D

Brody started KALYDECO at 6 months old

Watch Alissa and Dan share why starting their son, Brody, on KALYDECO at 6 months old was the right decision for them.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Brody

Age 21 months, G551D

Brody started KALYDECO at 6 months old

Watch Alissa and Dan share why starting their son, Brody, on KALYDECO at 6 months old was the right decision for them.

Watch

Brody started KALYDECO at 6 months old

Watch Alissa and Dan share why starting their son, Brody, on KALYDECO at 6 months old was the right decision for them.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Makson

age 7, R117H

Learn about Makson's KALYDECO story
Learn about Makson's KALYDECO story

For Kristen and Makson, sticking to a routine works

My son Makson is 7 years old. He loves baseball, karate, fishing, and just being outside.

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For Kristen and Makson, sticking to a routine works

My son Makson is 7 years old. He loves baseball, karate, fishing, and just being outside. He also has CF with an R117H mutation and takes KALYDECO.

Makson started KALYDECO when he was 6 years old. I had heard about KALYDECO from other parents of kids with CF, so I decided to talk to Makson's doctor about it. After going through the benefits and risks, we agreed to start.

Since then, KALYDECO has become part of our everyday routine. Maintaining a routine for my children is very important to me, whether it’s homework, eating, or getting outside—so we were able to fit it in pretty smoothly with the rest of Makson’s treatments. He usually takes KALYDECO tablets with peanut butter, his favorite fat-containing food. He’d eat peanut butter with every meal if he could. And now that he’s been taking it for a while, he’ll even remind me, “Mom, it’s time to take my KALYDECO!”

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Stacy

Age 33, G551D

Learn about Stacy's KALYDECO story
Learn about Stacy's KALYDECO story

Stacy is passionate about her music and her health

Music has always been a passion of mine, and I enjoy sharing music with others; it comes naturally to me.

Read More

Stacy is passionate about her music and her health

Music has always been a passion of mine, and I enjoy sharing music with others; it comes naturally to me. I’ve known I wanted to be a music teacher since I was 9 years old.

I was diagnosed with cystic fibrosis when I was 6 years old; a genetic test showed I had the G551D mutation. I had to make adjustments to my diet and some of my activities, but I’ve tried to never let CF hold me back.

Managing CF can be complex, so it’s really important to have a close relationship with your doctor. During one of my regular appointments with my CF healthcare team, I heard about KALYDECO. I was very interested and started asking my doctor a lot of questions.

My doctor felt it would be a good choice for me, because I have the G551D mutation. Before taking KALYDECO, my doctor and I discussed the possible side effects of KALYDECO, including that KALYDECO can cause serious side effects.

It’s always been important to me to find ways to follow my passion for playing music, while making my health a priority. And that includes taking KALYDECO, along with my other prescribed CF treatments.

Stacy was sponsored by Vertex Pharmaceuticals Incorporated to share her story.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Carter

Age 21, G551D

Learn about Carter's KALYDECO story
Learn about Carter's KALYDECO story

Carter stays diligent about taking his KALYDECO

I first heard about KALYDECO from my dad. During one of my appointments, he asked my doctor if I have the G551D mutation.

Read More

Carter stays diligent about taking his KALYDECO

I first heard about KALYDECO from my dad. During one of my appointments, he asked my doctor if I have the G551D mutation. My doctor checked and, sure enough, I did. I immediately got excited because of everything my doctor and my dad told me about KALYDECO. My doctor told me about potential side effects and, in the end, my dad and I felt comfortable moving forward with KALYDECO.

When I began taking KALYDECO, my mom helped me get organized and made sure I took it as my doctor had instructed. These days, I stay diligent about my routine and make sure I carve out time for my treatments.

Life with CF can sometimes be challenging, but I stay positive thanks to my relationships and knowing that my friends and family are always there for me.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

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Brody

Age 21 months, G551D

Brody started KALYDECO at 6 months old

Watch Alissa and Dan share why starting their son, Brody, on KALYDECO at 6 months old was the right decision for them.

Watch

Brody started KALYDECO at 6 months old

Watch Alissa and Dan share why starting their son, Brody, on KALYDECO at 6 months old was the right decision for them.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Mark

S945L

Learn about Mark's KALYDECO story
Learn about Mark's KALYDECO story

Mark strives to stay strong and active

I have enjoyed most of my life with my wife. I thrive on adventure. I enjoy being outdoors and being active. Life with CF has had its share of challenges.

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Mark strives to stay strong and active

I have enjoyed most of my life with my wife. I thrive on adventure. I enjoy being outdoors and being active. Life with CF has had its share of challenges. I have a lot to be thankful for—physicians, nurses, researchers, and many other dedicated professionals who have supported and monitored my health and well-being.

I view myself as a compliant patient. I am a reliable participant, a collaborator prepared for each doctor appointment with information, data, and questions to help manage my health. I always strive to stay strong, and I try to live my life as fully as I can.

Staying healthy isn’t always easy, but taking KALYDECO helps me know that I am doing what I can for my health. I am extremely grateful that KALYDECO is here for me.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Kaitlin

Age 27, G551D

Learn about Kaitlin KALYDECO story
Learn about Kaitlin KALYDECO story

Kaitlin finds strength in her support system

I have 2 dogs, and I love spending time outdoors with them. I also enjoy kayaking! Being active is a huge part of my life with CF.

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Kaitlin finds strength in her support system

I have 2 dogs, and I love spending time outdoors with them. I also enjoy kayaking! Being active is a huge part of my life with CF. My favorite kinds of exercise are running and hot yoga. They help my balance, strength, and mindset.

When I started taking KALYDECO, I noticed a change in my health. My weight increased and my pulmonary function tests improved. Seeing how KALYDECO has impacted my health is my motivation to continue taking it and to further participate in the CF community. It’s so exciting and rewarding to be able to help spread awareness about CF!

I have a pretty amazing support system. My family and friends are nothing short of encouraging. I have been blessed to find a wonderful husband, and he and his family have been so supportive. They all push me to be my best!

KALYDECO fits into my daily routine. I work the night shift as a nurse, and I’ve found that setting an alarm on my phone really helps me step away from whatever I am doing to just grab a snack and take my medication. My favorite thing to take it with is a big spoonful of peanut butter and some nuts, cheese, and dried fruit. I’m so grateful for KALYDECO!

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Lily

Age 11, G551D

Learn about Lily's KALYDECO story
Learn about Lily's KALYDECO story

Vertex GPS™: Guidance & Patient Support is there for Lily

Lily’s doctors decided KALYDECO would be the best option for her, and we were able to start her on it.

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Vertex GPS™: Guidance & Patient Support is there for Lily

Lily’s doctors decided KALYDECO would be the best option for her, and we were able to start her on it. Within a week, we were able to notice changes in Lily. She is diligent about her treatment and sticks to her routine. Lily learned how to take pills in order to take KALYDECO. We’re grateful for KALYDECO.

Vertex GPS™: Guidance & Patient Support has been beyond helpful during our KALYDECO journey. They are always there to help when we have questions about product or insurance support. It makes me feel good knowing they are here to help. Vertex seems to truly care, and that’s a great feeling.

Lily’s mom, Carissa

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Cooper

Age 4, L206W

Learn about Cooper's KALYDECO story
Learn about Cooper's KALYDECO story

Amanda teaches Cooper the importance of taking his medicines

Cooper loves doing tae kwon do. He’s one of the youngest and smallest in his class, but he always gets out and does his best.

Read More

Amanda teaches Cooper the importance of taking his medicines

Cooper loves doing tae kwon do. He’s one of the youngest and smallest in his class, but he always gets out and does his best. His care team has mentioned that staying active has helped him stay healthy as he continues to grow!

When KALYDECO was approved for Cooper’s gene mutation, we talked to his doctor about the benefits and risks of KALYDECO. We were excited to get him started and believed it would benefit him in the long run. We noticed improvements in sweat chloride levels within the first few weeks, even during the hot Texas summer!

We talk to Cooper every day about the importance of taking his medications and the long-term impact CF can have on his body. Cooper takes both his morning and evening doses with chocolate hazelnut spread, his favorite fat-containing food. Today, taking KALYDECO has become part of our regular routine.

Cooper’s mom, Amanda

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Makson

age 7, R117H

Learn about Makson's KALYDECO story
Learn about Makson's KALYDECO story

For Kristen and Makson, sticking to a routine works

My son Makson is 7 years old. He loves baseball, karate, fishing, and just being outside.

Read More

For Kristen and Makson, sticking to a routine works

My son Makson is 7 years old. He loves baseball, karate, fishing, and just being outside. He also has CF with an R117H mutation and takes KALYDECO.

Makson started KALYDECO when he was 6 years old. I had heard about KALYDECO from other parents of kids with CF, so I decided to talk to Makson's doctor about it. After going through the benefits and risks, we agreed to start.

Since then, KALYDECO has become part of our everyday routine. Maintaining a routine for my children is very important to me, whether it’s homework, eating, or getting outside—so we were able to fit it in pretty smoothly with the rest of Makson’s treatments. He usually takes KALYDECO tablets with peanut butter, his favorite fat-containing food. He’d eat peanut butter with every meal if he could. And now that he’s been taking it for a while, he’ll even remind me, “Mom, it’s time to take my KALYDECO!”

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Stacy

Age 33, G551D

Learn about Stacy's KALYDECO story
Learn about Stacy's KALYDECO story

Stacy is passionate about her music and her health

Music has always been a passion of mine, and I enjoy sharing music with others; it comes naturally to me.

Read More

Stacy is passionate about her music and her health

Music has always been a passion of mine, and I enjoy sharing music with others; it comes naturally to me. I’ve known I wanted to be a music teacher since I was 9 years old.

I was diagnosed with cystic fibrosis when I was 6 years old; a genetic test showed I had the G551D mutation. I had to make adjustments to my diet and some of my activities, but I’ve tried to never let CF hold me back.

Managing CF can be complex, so it’s really important to have a close relationship with your doctor. During one of my regular appointments with my CF healthcare team, I heard about KALYDECO. I was very interested and started asking my doctor a lot of questions.

My doctor felt it would be a good choice for me, because I have the G551D mutation. Before taking KALYDECO, my doctor and I discussed the possible side effects of KALYDECO, including that KALYDECO can cause serious side effects.

It’s always been important to me to find ways to follow my passion for playing music, while making my health a priority. And that includes taking KALYDECO, along with my other prescribed CF treatments.

Stacy was sponsored by Vertex Pharmaceuticals Incorporated to share her story.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Carter

Age 21, G551D

Learn about Carter's KALYDECO story
Learn about Carter's KALYDECO story

Carter stays diligent about taking his KALYDECO

I first heard about KALYDECO from my dad. During one of my appointments, he asked my doctor if I have the G551D mutation.

Read More

Carter stays diligent about taking his KALYDECO

I first heard about KALYDECO from my dad. During one of my appointments, he asked my doctor if I have the G551D mutation. My doctor checked and, sure enough, I did. I immediately got excited because of everything my doctor and my dad told me about KALYDECO. My doctor told me about potential side effects and, in the end, my dad and I felt comfortable moving forward with KALYDECO.

When I began taking KALYDECO, my mom helped me get organized and made sure I took it as my doctor had instructed. These days, I stay diligent about my routine and make sure I carve out time for my treatments.

Life with CF can sometimes be challenging, but I stay positive thanks to my relationships and knowing that my friends and family are always there for me.

View Important Safety Information and full Prescribing Information, including Patient Information, for KALYDECO.

Go to Share Your Story

Share Your Story

Help other patients and caregivers.

Important Safety Information

Do not take KALYDECO if you take certain medicines or herbal supplements, such as:

  • the antibiotics rifampin (RIFAMATE®, RIFATER®) or rifabutin (MYCOBUTIN®)
  • seizure medicines such as phenobarbital, carbamazepine (TEGRETOL®, CARBATROL®, and EQUETRO®), or phenytoin (DILANTIN®, PHENYTEK®)
  • St. John’s wort

Talk to your doctor before taking KALYDECO if you take any of the medicines or supplements listed above.

What is KALYDECO® (ivacaftor)?

What is KALYDECO®
(ivacaftor)?

KALYDECO is a prescription medicine used for the treatment of cystic fibrosis (CF) in patients age 4 months and older who have at least one mutation in their CF gene that is responsive to KALYDECO.

Talk to your doctor to learn if you have an indicated CF gene mutation.

It is not known if KALYDECO is safe and effective in children under 4 months of age.

What should I tell my doctor before taking KALYDECO?

Before you take KALYDECO, tell your doctor if you:

  • have liver or kidney problems
  • drink grapefruit juice or eat grapefruit
  • are pregnant or plan to become pregnant. It is not known if KALYDECO will harm your unborn baby. You and your doctor should decide if you will take KALYDECO while you are pregnant
  • are breastfeeding or planning to breastfeed. It is not known if KALYDECO passes into your breast milk. You and your doctor should decide if you will take KALYDECO while you are breastfeeding

KALYDECO may affect the way other medicines work, and other medicines may affect how KALYDECO works.

Tell your doctor about all the medicines you take, including prescription and non-prescription medicines, vitamins, and herbal supplements, as the dose of KALYDECO may need to be adjusted when taken with certain medications.

Especially tell your doctor if you take:

  • antifungal medications such as ketoconazole (e.g., NIZORAL®), itraconazole (e.g., SPORANOX®), posaconazole (e.g., NOXAFIL®), voriconazole (e.g., VFEND®), or fluconazole (e.g., DIFLUCAN®)
  • antibiotics such as telithromycin (e.g., KETEK®), clarithromycin (e.g., BIAXIN®), or erythromycin (e.g., ERY-TAB®)

What should I avoid while taking KALYDECO?

  • KALYDECO can cause dizziness in some people who take it. Do not drive a car, use machinery, or do anything that needs you to be alert until you know how KALYDECO affects you
  • You should avoid food containing grapefruit while you are taking KALYDECO

What are the possible side effects of KALYDECO?

KALYDECO can cause serious side effects.

High liver enzymes in the blood have been reported in patients receiving KALYDECO. Your doctor will do blood tests to check your liver:

  • before you start KALYDECO
  • every 3 months during your first year of taking KALYDECO
  • every year while you are taking KALYDECO

For patients who have had high liver enzymes in the past, the doctor may do blood tests to check the liver more often.

Call your doctor right away if you have any of the following symptoms of liver problems:

  • pain or discomfort in the upper right stomach (abdominal) area
  • yellowing of your skin or the white part of your eyes
  • loss of appetite
  • nausea or vomiting
  • dark, amber-colored urine

Abnormality of the eye lens (cataract) has been noted in some children and adolescents receiving KALYDECO. Your doctor should perform eye examinations prior to and during treatment with KALYDECO to look for cataracts.

The most common side effects of KALYDECO include:

  • headache
  • upper respiratory tract infection (common cold), including sore throat, nasal or sinus congestion, runny nose
  • stomach (abdominal) pain
  • diarrhea
  • rash
  • nausea
  • dizziness

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of KALYDECO. For more information, ask your doctor or pharmacist.

Call your doctor for medical advice about side effects. You are encouraged to report side effects to FDA at 1-800-FDA-1088.

For further information, please see full Prescribing Information, including Patient Information.

People with CF pictured may or may not be taking KALYDECO.