Emily has Cystic Fibrosis (CF). CF is a genetic condition where sufferers experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body. For Emily this has also meant she has CF related diabetes.
Despite the fact that there is currently no cure for CF, there are treatments that can improve patients quality of life. Emily has to independently incorporate over three hours of treatments into her every day life. This includes, physio, giving IV antibiotics, blood monitoring and taking over 30 tablets a day. Emily started university last year and manages to get through each day like every other sufferer but recently she has found the illness very difficult to cope with. In the past year, despite all treatments and long periods in hospital, her health has deteriorated greatly and her lung function and weight has dropped significantly.
Currently, Emily has a rare fungus called Scedosporium which causes thick muscus in her lungs. This has now caused permanent damage to her lungs, resulting in further decline in lung function and weight loss.
Symdeko is a prescription drug used for the treatment of CF, currently not available on the NHS. This drug slows the decline in lung function - the main cause of death among people with CF. The Cystic Fibrosis Trust are currently campaigning to put pressure on the Government, NHS and pharmaceutical companies to ensure these drugs reach the people who need them without delay. However this has been a long campaign which is still ongoing and unfortunately may not be in time for Emily to benefit.
I have had a quote from Vertex (pharmaceutical company) for a years supply of Symdeko which could buy Emily some time. Unfortunately, this comes with a price tag of £159,526.92!!!
Therefore, I'm reaching out to you all in the hope that we can reach this target together. Any contribution large or small would be gratefully received.