@lizzy
-
Lizzy replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 10 months, 4 weeks 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
-
Lizzy replied to the topic The other 10%…. FDA approves Trikafta in the forum Trikafta: Triple Combination CFTR Modulator 11 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]
-
Lizzy replied to the topic Mum of an awesome teen with CF in the forum Introductions 1 year, 6 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
-
Lizzy started the topic Mum of an awesome teen with CF in the forum Introductions 1 year, 8 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]
-
Lizzy became a registered member 1 year, 8 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]
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!