“What is Cystic Fibrosis?” – A Breathtaking Spoken Word Piece

Meet Morgan Grindstaff, also known as Cystik1. The 25-year-old YouTuber has been battling cystic fibrosis (CF). In this video, listen to him recite a strong and emotional spoken word piece about his struggle.

Here’s 10 Cystic Fibrosis Channels You Must Follow

In his other videos, he talks about other aspects of having CF. Below, there’s a playlist documenting his Orkambi journey.

In March, the U.K. National Institute for Health and Care Excellence (NICE) issued a draft guidance against recommending Orkambi (lumacaftor-ivacaftor) for treating cystic fibrosis (CF) since its cost is too high for the low benefits it brings.

Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

4 comments

  1. Karen Koba says:

    I love your truth and honesty and letting everyone know what people living with CF have to live with every day of their lives. I am so very proud of you. My granddaughter, Kaelie who is 13 is living with Cystic Fibrosis. Thank you for making everyone aware of jus to live with every day of their lives. God bless you. Love. Karen Smith Koba

    • Dianne Roncal, DMD says:

      Hi Karen, thank you for watching! Awareness is the key. Know that you are not alone and a disease is not a reason to give up. Sending positive energy to your granddaughter, Kaelie. 🙂

  2. Lucy Ortiz says:

    I know so much how you feel. I live 22 years of my life with my 22 year old son and all I ever want is to be able to trade his life with mine (without CF). I love my son so much and my hearth broke to see him fight day by day with this chronic disease. But he still alive and getting the best quality of life we can possible provide for him. He is my Angel, he is my inspiration.
    When somebody ask me what is wrong with you son?: is it kind of asthma? They ask… and I reply “yes it is something like asthma” but I think “you really won’t get it”

    • Dianne Roncal, DMD says:

      I am so sorry to hear that, Lucy. Kids are the greatest blessing and seeing a child suffer from a disease is a total pain but you have a strong son who fights this every day.
      Sometimes, kids inspire us and they don’t even know it. Sending beautiful and positive vibes to you, Lucy.

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