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Christina Kolassa

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@ckolassa

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  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic A quick COVID check in in the forum Coronavirus (COVID-19) and CF 2 months, 4 weeks ago

    I have 2 kids with CF, Will and Sarah. Will was the first in our family to test positive back in Oct of 2020.  He was completely a-symptomatic.  We only had him tested because he traveled in a car with a friend that tested positive.  Will remained positive for over 3 weeks with no symptoms.  His sister, Sarah, has yet to test positive.  We have…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Pancreatic (in)sufficient? in the forum Adults​ ​With​ ​Cystic Fibrosis 2 years, 3 months ago

    What do the docs attribute the decreased need for enzymes? I’m wondering if they’ve figured that out yet. Trikafta is bringing new and exciting news in the CF community on a daily basis. Go Vertex!

  • Profile picture of Luisa Palazola

    Luisa Palazola and Profile picture of Christina KolassaChristina Kolassa are now friends 2 years, 5 months ago

  • Profile picture of Janice Hankins

    Janice Hankins and Profile picture of Christina KolassaChristina Kolassa are now friends 2 years, 5 months ago

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 2 years, 5 months ago

    Has anyone had a blood draw showing a high CK Level? My son, Will, who has been on Trikafta since Oct 2018 recently was hospitalized for very high CK level in his blood. Just prior to the blood draw he lifted weights with a friend. The docs were concerned that the drug may have caused the elevated levels. While in the hospital they monitored…[Read more]

    • Profile picture of Bailey Vincent
      Bailey Vincent replied 2 years, 5 months ago

      Christina, the second I read this, I remembered an article I read in Shape magazine some years prior that really stuck with me: https://www.shape.com/lifestyle/mind-and-body/the%20pull-up%20workout%20that%20nearly%20killed%20me

      It was about a woman who had this condition, and I believe I’ve read about it a couple times since (Can you tell I read…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Back to school, or not? in the forum Coronavirus (COVID-19) and CF 2 years, 8 months ago

    I have been told that my kids were going to die from the day they were born. I have 2 kids with CF. So for the last 18 years that’s something I’ve had to deal with. Now since the discovery of the drug Trikafta, the death card has been removed from the table. I am wholeheartedly going to continue along the path of happiness and no fear and send…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Leaping For Science: Do The Risks Pay Off? in the forum CF Science and Research 3 years ago

    My CF kids will grow up thinking I was a nut because of all the things I was willing to try. We’ve tried Colloidal Silver, low level laser therapy, muscle testing, acupuncture, drum lessons and anything that I thought wouldn’t hurt them. My thought was “nothing we know of now has worked so why not try things outside the norm”. I did everything…[Read more]

    • Profile picture of Bailey Vincent
      Bailey Vincent replied 3 years ago

      I couldn’t love this post more. Thank you… yes! Here’s to crazy moms who love ferociously!!!

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic "Normal people sick" and other code words/phrases in the forum Adults​ ​With​ ​Cystic Fibrosis 3 years, 1 month ago

    I totally get what you’re saying. This week my son, with CF, got “normal people sick”! His CF carrier brother got a virus and passed it to him. It’s such a different feeling knowing that now that he’s on Trikafta and his body is functioning more normally, that this sickness is going to pass without major pulmonary setbacks! I’m so tired of…[Read more]

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    Christina Kolassa replied to the topic MCM: Vinny in the forum Man Crush Monday 3 years, 1 month ago

    I love your story! It mirrors my kids’ lives. We have 2 kids with CR, Will, 17 and Sarah, 12. They were also diagnosed early, (actually at birth because of Maconium Illius for both). We have always expected good things to happen despite dealing with a CF diagnosis. I truly believe that the mental state of both the care giver and affected…[Read more]

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    Christina Kolassa replied to the topic How do you feel about scars? in the forum Adults​ ​With​ ​Cystic Fibrosis 3 years, 2 months ago

    My 12 year old daughter has scars from her 3 surgeries at birth to fix a blockage caused by Maconium Illius. Just recently she mentioned that she wished she had a flat stomach. I know she’s just entering puberty and it’s going to be a rough road, but it broke my heart to hear it. I’ve told her they’re war wounds and she should be proud of the…[Read more]

    • Profile picture of Bailey Vincent
      Bailey Vincent replied 3 years, 2 months ago

      Ugh this breaks my heart for both of you! My youngest mentioned something about her body the other day that took me by surprise.. and she doesn’t even have CF or scars to contend with, yet it still alarmed me. I still struggle with my own scars a lot of the time, but have found some freedom in being an online advocate and my dance career, because…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Clinical Trials in the forum CF Science and Research 3 years, 2 months ago

    Participating in Clinical Trials at this time in history is life-changing! I believe participation in trials has an even greater impact on finding a cure than fundraising at this point. The drugs being introduced now WILL CHANGE YOUR LIFE! My son participated in the Trikafta trial and he’s a different person. His life has been renewed. It’s…[Read more]

    • Profile picture of Bailey Vincent
      Bailey Vincent replied 3 years, 2 months ago

      This is so encouraging and lovely. If you don’t mind my asking, what are some of the ways your son’s health has improved lately? I love reading positive stories and hoping towards the future for everyone!

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Real Talk Tuesday: CFTR Modulators and Reproductive Health (personal experience) in the forum Adults​ ​With​ ​Cystic Fibrosis 3 years, 3 months ago

    The first time my son’s pediatrician heard about him being on the trial for Trikafta, he mentioned the unexpected issue of a change in reproductive health. I was a little surprised but it’s true, we need to re-evaluate how this amazing drug will impact all aspects of our lives! Thank you Vertex and Alex Abela, the scientist that created the…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Man Crush Monday: Nick in the forum Man Crush Monday 3 years, 4 months ago

    Trikafta changes things! I hope you have as much success as our son has had over the last year. He is in the trial for VX-445, now known as Trikafta, and it has completely changed EVERYTHING! Thank God for the scientists at Vertex, especially Alex Abela the one discovered the molecule!

    • Profile picture of Jenny Livingston
      Jenny Livingston replied 3 years, 4 months ago

      Christina, thanks for sharing your son’s story of success! It’s such an exciting time for our community!

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic What will life look like on Trikafta? in the forum Trikafta: Triple Combination CFTR Modulator 3 years, 4 months ago

    After reflecting on my initial response to the article, I feel the need to apologize. I understand the change will create lots of emotions. I’m just so happy with the results we’ve experienced, all I could do was focus on the good. I know how important mental health for the patient is and I’m just the mom. I don’t know what it feels like to…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic What will life look like on Trikafta? in the forum Trikafta: Triple Combination CFTR Modulator 3 years, 4 months ago

    Wow, wow, wow! I never thought I’d hear such a sad sentence… “I’ve recently come across multiple posts from people who are eligible for Trikafta, but are concerned that with the increase in lung function that is predicted with this drug, they’ll lose disability.” I will pray for the folks that have these thoughts. My son, Will has been on the…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa replied to the topic Doctors and Scientists Who Work with the CF Community Are Just Like Us in the forum Adults​ ​With​ ​Cystic Fibrosis 3 years, 11 months ago

    I have 2 kid with CF. I had the extreme privilege of meeting some of the top scientist at Vertex as well as top researchers in CF back in Oct 2018. They were amazing. I went to Harvard Medical School to witness the Warren Alpert award ceremony and symposium. The top 5 medical researchers for Cystic Fibrosis were being recognized as the world’s f…[Read more]

  • Profile picture of Christina Kolassa

    Christina Kolassa became a registered member 4 years, 2 months ago

    • Profile picture of Michael Morale
      Michael Morale replied 4 years, 2 months ago

      Christina – My name is Michael Morale, and I’m the Forums and Multimedia Director for Cystic Fibrosis News Today. I want to thank you for taking the time out of your day and becoming a member of our Cystic Fibrosis forum. Our job is to make sure that we provide you with the information that you’re looking for, and to try to assist you in any way p…[Read more]

    • Profile picture of Tré LaRosa
      Tré LaRosa replied 4 years, 2 months ago

      Hi Christina! My name is Tré LaRosa and I’m one of the Forum Moderators. Thanks for becoming a member! I’m excited about what this forum could become as a place for quality discussion and a welcoming place for the community. Looking forward to your contributions!

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