Cystic Fibrosis News Today Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search
  • COVID-19
  • What can we help you find today?

Lizzy

Home Members Lizzy
show less show more
Profile picture of Lizzy

@lizzy

  • Activity
  • Profile
  • Friends 0
  • Groups 0
  • Forums
  • Articles
  • Media 0
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Lizzy

    Lizzy replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 2 years, 8 months ago

    Thanks for replying Jenny. Coincidentally a deal on Orkambi/Symkevi was agreed today in England. So much good news, after too long a wait.

    I will be shouting loudly so the remaining 10% are not forgotten too. Just blogged about this here…

    http://mymerrymolyworld.blogspot.com/

    Have a great day, and good luck on the new drugs x

  • Profile picture of Lizzy

    Lizzy replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 2 years, 8 months ago

    My son (14) is one of the 10%. He has two, rare, severe (class 1) mutations.

    I’ve been to protests in London as NHS England has yet to approve Orkambi, let alone a triple combo, despite these not being a solution for Isaac. It’s certainly a very wonderful and exciting time for the CF community! But I would be lying if I said that I wasn’t conce…[Read more]

  • Profile picture of Lizzy

    Lizzy replied to the topic Mum of an awesome teen with CF in the forum Introductions 3 years, 4 months ago

    Hi Luisa, the link you have given above for parents and caregivers does not work for me…. is this forum now open? Thanks!

    http://mymerrymolyworld.blogspot.com

    lizzy x

  • Profile picture of Lizzy

    Lizzy started the topic Mum of an awesome teen with CF in the forum Introductions 3 years, 5 months ago

    Hi, I am Lizzy. I have 3 kids, and my eldest, Isaac, has CF. We had IVF and pre-implantation genetic diagnosis to conceive our daughters, ensuring that they do not. We live in the U.K.

    Isaac has had a rough year, six courses of IVs, and a spell in PICU. He never complains though – I am in awe of him! I write a blog about us at…[Read more]

  • Profile picture of Lizzy

    Lizzy became a registered member 3 years, 5 months ago

    • Profile picture of Michael Morale
      Michael Morale replied 3 years, 5 months ago

      Lizzy – 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 possi…[Read more]

    • Profile picture of Tré LaRosa
      Tré LaRosa replied 3 years, 5 months ago

      Hi Lizzy! 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!

Profile Photo Carly Lindmeier Profile Photo Kelsey

Register

Forums search

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages

Who’s Online

Profile picture of Luisa Palazola

Newest Topics

  • Recent Favorites/Fun Activities by Jenny Livingston
  • Sunday Morning (68): What about the Kidney? by Paul met Debbie
  • A (re)introduction by Luisa Palazola
  • What do you wish doctors understood about living with CF? by Jenny Livingston
  • Sunday Morning (67): On the waiting list by Paul met Debbie

Recent Replies

  • A (re)introduction
  • A (re)introduction
  • Trikafta – Expect more benefit than just to mucous and sweat, lungs and gut.
  • Trikafta Side Effects
  • Trikafta Side Effects

Members

Newest | Active | Popular
  • Profile picture of Luisa Palazola
    Luisa Palazola
    Active 1 minute ago
  • Profile picture of Janee
    Janee
    Active 19 minutes ago
  • Profile picture of Jenny Livingston
    Jenny Livingston
    Active 57 minutes ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 5 hours, 10 minutes ago
  • Profile picture of Alex
    Alex
    Active 11 hours, 36 minutes ago

Forums

  • 31 Days of CF 2022
  • Coronavirus (COVID-19) and CF
  • Friends and Family of people with Cystic Fibrosis
  • Man Crush Monday
  • Trikafta: Triple Combination CFTR Modulator
  • Women Crush Wednesday
  • Adults​ ​With​ ​Cystic Fibrosis
  • 31 Days of CF
  • CF Science and Research
  • Cystic Fibrosis ​and​ ​Dating/Relationships
  • Cystic Fibrosis Resources
  • Introductions
  • Using our forums
  • Treatment routines, medicines, and the like
  • Going​ ​To​ ​College​ ​When​ ​You​ ​Have​ ​Cystic Fibrosis
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • CF and Depression and Anxiety
  • Most popular topics
  • Topics with no replies

Cystic Fibrosis News Today

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy

Recent Posts

  • Kaftrio Eases Abdominal Symptoms Among CF Patients in Germany, UK
  • Trikafta After CF Lung Transplant: Not Well-tolerated, Modest Benefits
  • Let’s Maintain Hope, Even When History Repeats Itself

Disclaimer

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.

BioNews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy
Disclaimer

This site 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.

Copyright © 2017-2022 All rights reserved.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or     Create an account

Lost your password?

Forgot your details?

I remember my details

Create Account