Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food. In the UK, most cases of cystic fibrosis are picked up at birth using the newborn screening heel prick test.
Can you live a long life with cystic fibrosis? Whilst there is no cure for cystic fibrosis (CF), people with CF are extending their life expectancy and living longer, healthier lives than ever before. Babies born with CF today are expected to live into their mid-40s and beyond. Life expectancy has improved so dramatically that there are now more adults with cystic fibrosis than children.
A charity has been set up by Josh Llewellyn-Jones (OBE) and Mark his brother. Josh from Cardiff was diagnosed with cystic fibrosis at birth and at the age of two years of age was fortunate enough to get the right medical attention from an American specialist late Dr. Bob Kramer from Dallas in Texas USA. Josh is extremely fit and holds the Guinness Book of World Records for lifting one million kilograms in 22 hours 10 minutes back in October 2018, which is equivalent to lifting 700kg a minute. Josh is a motivational speaker and empowers children with cystic fibrosis.
I am a 20-year-old female that is about to start University in September 2021 and I suffer from ‘Multiple Sclerosis’. I live at home with my mum and my MS cat called ‘Tibbles’.
My mum read online when I was first diagnosed with MS that cats can be good for therapy. My cat is my faithful companion and is super loyal to me as I was the one that brought him up and litter trained him. He follows me everywhere and sleeps with me.
I am always feeling tired, I always try to get a good 8 hours sleep but I do not know what it is called but my legs feel so heavy and I find it difficult to get into a comfortable position (not sure if that is restless leg syndrome or not)?
My legs ache and my neurologist told me to double up on my ‘Gabapentin’ but the ‘Gabapentin’ also makes me feel zonked out. I cannot concentrate if I feel zombified. I cannot win.
“I have to be super alert for my studying”. I cannot afford to feel drowsy during lessons.
Whenever I travel anywhere I always catch an Uber (hospital appointments). My mum used to come with me until the pandemic started and only one person was allowed in, so it was not worth my mum coming with me.
I do not like public transport especially because of ‘Covid’and not being able to keep a safe distance from anyone, let alone the walking and standing to catch a bus, my legs cannot handle it.
My mum is my carer and helps with my shopping. She does her best to cook because although I do like cooking I cannot stand for long lengths of time, so my mum has no option but to cook for me.
I would like to lead a normal life but my household is by far from normal. My mum suffers from OCD so we are as bad as one another.
No two days are ever the same, I have good days where I do not feel sad and depressed and other days where I just want to stay in bed all day. My health is not perfect and I am starting to learn to adapt to my disabilities. As an example, I have had cataract surgery and have to have my driving license reviewed every 3 years.
I feel sad life has dealt me this card but it could have been much worse so I have to stay optimistic and you never know scientists may find a cure for it someday.
My mum had a couple of suction bathoom grab bars fitted to help with getting out of the bath.
I do have really bad days and feel extremely sad and cry for no reason. I can thank my mum for being there to put a smile on my face and cheer me up, she is like a counselor to me and motivates me.
I have noticed I have gained weight. I cannot exercise like walking for example because my legs hurt.
I do try and maintain a healthy diet but I think my medication is somewhat to blame for my weight gain (contraceptive pill).
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