Kaftrio – day 1
Born with Cystic Fibrosis in 1979, I, as well as all CF people, have been waiting for this day…a treatment that is close to a cure to Cystic Fibrosis.
Here is a video blog about my journey as I start taking the treatment. Read More …
Category: Cystic Fibrosis
Time to digest foods and why it’s important
All foods digest in the body at different times. This is how long they sit in the stomach before passing into the intestine. It’s important to understand the different food digestion times to avoid digestive issues or discomfort. If you Read More …
Add Cystic Fibrosis to the exempt from prescription charges list
Please click here to sign the petition People with certain medical conditions are exempt from paying prescription charges. However, the list of exempt conditions does not include cystic fibrosis. This is because the exempt list was drawn up over 40 Read More …
A time for the Cystic Fibrosis community to celebrate…
Today I’ve had news that NHS England has reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks. This was brought to my attention through the Cystic Fibrosis (CF) clinic I attend after it was announced on BBC News Read More …
Endurance Test
Wednesday, 16 October 2019 Today at the CF clinic I did an endurance test, something I do as part of my annual assessment to see if changes to my treatment are required. Usually, there are minor tweaks. Mainly new and Read More …
World Mental Health Day
Thursday, 10 October 2019 Today is World Mental Health Day. Some will know what it means to raise the importance of talking about what is on your mind, which is one way of dealing with mental health. Another is doing Read More …
Transfer from DLA to PIP 8
Originally published on Tuesday, 19 December 2017 Update on my fight against DWP’s decision on my PIP application: It’s been a whilst since I last wrote a blog in regards to my PIP appeal. The tribunal came and I was Read More …
Transfer from DLA to PIP 7
Originally published on Friday, 12 May 2017 Update on my fight against DWP’s decision on my PIP application: Today I’ve had a response from DWP in regards to my Mandatory Reconsideration. The outcome is they are ignoring existing or fresh Read More …
Transfer from DLA to PIP 6
Originally published on Wednesday, 19 April 2017 Update on my fight against DWP’s decision on my PIP application: Today I sat with my Social Worker to look through the Mandatory Reconsideration letters we are sending to DWP. Letter 1, which Read More …
Transfer from DLA to PIP 5
Originally published on Wednesday, 12 April 2017 Update on my fight against DWP’s decision on my PIP application: Today I received by post a copy of the Consultation Report Form (PA4). Immediately I telephoned my Social Worker and made an Read More …