Note the 'For now' part of the original statement.
“So, today is the last day of the UK CF Week, and I’ve been posting quite a bit about it. I’m going to make this my last post for the week, people may ignore this, people may read it. It’s a stark and shocking way of putting it, but that’s life. Also if it isn’t a trendy or media friendly disease like cancer people generally don’t give a shit. Truth.
Cystic Fibrosis: I could give you the medical definition of what it is, but that surely doesn’t do justice to the realities of it all. Cystic Fibrosis is a disease that slowly destroys your body one day at a time. It causes constant pain and fatigue. Hours worth of treatments and over 30 pills… not every week, but every single day. Your lungs ache and struggle to do, what seems to others, the “simple” process of breathing.
Toxic antibiotics that improve, but yet also destroy your body. Doctors, nurses, and respiratory therapists are considered family.
We reach 18 years old. We’re not celebrating because we are now considered a legal adult, we are celebrating because we are alive. Our bodies are starved from proper nutrients and oxygen. Kidneys fail. Livers fail. Hearts fail. Lungs fail. Bodies fail. People die.
Kids who never got the chance to see high school, teenagers who were holding on to hopefully make it until graduation, and adults who waited endless hours, but never received that call.
Think this is too harsh? Welcome to the life of thousands of people, who despite all of this, keep an immense amount of laughter and positivity in their lives. Welcome to life of thousands of people who deserve a cure.”
I should also add that some credit has to go to Dan Argyle for this! Strong, and very true.
“Here in the UK, the Department For International Development (DFID) contributes an average of £250 million a year in aid to Bangladesh & they’ll continue to until 2015. Is it any wonder, that people like me who suffer from CF are becomingly increasingly infuriated by such actions when all that is required to initiate ground breaking treatment into a cure for CF is just… £6 million? Imbalance needs to be addressed!”