My name is Lydia Daly. I'm 19 years old and I'm from Dublin, Ireland. I suffer with Cystic Fibrosis, a genetically inherited life-threatening disease. Not many people know much about CF or understand how it works so I decided to make this blog so people can follow the ups and downs of every day life for somebody with CF.
Cystic Fibrosis is Ireland's most common life-threatening genetically inherited disease. With 1100+ CF Patients, Ireland has the highest proportion of CF people in the world.
CF affects primarily the lungs, digestive system and reproductive system. People with CF regularly get life-threatening lung infections, suffer from malnutrition and infertility.
The lungs get clogged up with thick sticky mucous which obstructs and damages the airways. This makes it very hard to breathe on a daily basis and often leaves a CF sufferer exhausted. We need to do daily breathing treatments which can take up a lot of our time as well as up to 50 + tablets a day just to feel ok. As well as medications we need to take nutritional supplements to maintain a healthy weight as we lack in digestive enzymes to absorb fats. Most people think I'm really lucky because I can eat whatever I want and not gain weight, but believe me when your life depends on it, it's not that great. We are on antibiotics nearly all the time, some are tablets and some are intravenous which we need to inject. The average 19 year old has between 90% - 100% lung function, I currently have 33%. Our lung functions progressively drop over time and eventually leaves us with no other choice than to go on a waiting list for a double-lung transplant. Some people think this is an easy option, but this is by no means a cure. You are simply trading one illness for another. If you are lucky enough to get a transplant, you have to realise that you are putting a foreign organ into your body so naturally your body will try to destroy it. This is known as 'rejection'. Rejection occurs with all transplants, there's no avoiding it but with the daily use of immuno-suppressants you can hopefully delay this process and make the most of your new lungs.
A healthy individual can eat whatever they want and not think twice about it. For someone with CF, the pancreas becomes blocked and fails to produce an enzyme that can digest fat. This means that if I was to eat something fatty it would go through my stomach undigested and cause excruciating pain. In order to avoid this, I have to take enzyme tablets every single time I eat anything. Depending on what I eat, I have to calculate how many enzymes I need to take. 1 Tablet digests 5-8g of fat. So for example, if I was to eat a pizza or a chinese take-away, I would need to take between 5-10 tablets.
As the pancreas continues to fail, it can also stop producing insulin which is responsible for controlling blood sugar levels. This results in diabetes.
Many CF suffers have trouble with sinuses but fortunately that's one thing I don't have an issue with.... Yet!
Twenty years ago, children born with CF didn't live out of infancy but thanks to medical advances and continuous research, new treatments and medications can improve the quality of life and life expectancy of a baby born today.
The current average life expectancy for a person with CF in Ireland is 37.
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