Meet Ciara Hillyer, a 24 year-old photographer and YouTuber from Bristol.
Hillyer was diagnosed with cystic fibrosis when she was 5 days old: "I was born with meconium ileus (a bowel obstruction), which is a huge indicator of cystic fibrosis in a newborn. Alarm bells rang when I didn’t have a dirty nappy after a couple of days."
Cystic fibrosis is caused by a faulty gene carried by 1 in 25 people. The condition causes the body to produce a thick mucus, which affects the lungs and the digestive and reproductive systems in particular.
A lot of people aren't aware of the symptoms of cystic fibrosis. HiIlyer has kindly given us some pointers on what her daily life looks like and what she wants others to know.
1. A big part of having cystic fibrosis is having to take A LOT of meds.
"As my system doesn’t absorb nutrition and digest food as normal, I have to take tablets every time I eat. Depending on the fat and protein content and method of cooking, the quantity of tablets can be up to 50 a day.
"In addition to those tablets, I have a cocktail of tablets, everything from antibiotics, to steroids, to antifungal, to name a few, 30 every morning and 20 at night.
"I nebulise five times a day. I have sinus washouts and nasal sprays. I use three different inhalers throughout the day and night. I’m also diabetic so I take insulin and check my blood sugars through the day. That's the basic everyday list when I’m well, but when I’m more unwell that can increase, including having regular intravenous treatments."
2. Some symptoms are more awkward than others.
"When I eat my tummy bloats because my digestive system doesn’t work properly, so it looks like I have a big baby bump! And coughing can be frustrating, especially if I’m in a quiet room – people tend to look at me. Sometimes my chest squeaks as well, which is actually quite amusing. It happened once at uni and one of the lecturers was like, 'Ciara, WTF was that?!'"
3. The diagnosis can be tough on your family.
"My family have been with me through everything. They’ve seen me when I’ve been unable to walk or sit up. They’ve seen me gasping for breath, collapsed due to constant coughing, sleepless and completely stressed out due to the uncertainty of my life. But they’ve also been with me for my high points, when I graduated from university and when I gave my first TV interview."
4. Sometimes you lose control over your body.
"I woke up from an operation a few years ago and I couldn’t walk or lift my arms. For about 72 hours, my body was unbelievably stiff. It was like my muscles and bones just gave up on me! I remember my brother had to physically lift me up and carry me – that was terrifying for both of us."
5. Patients with cystic fibrosis can't actually meet each other.
6. You have to resign yourself to the fact that you might not be able to do everything you want to do.
"I’d love to travel to different cities across the world, but it would very complicated because of insurance, medication, and my unpredictable health. Don’t get me wrong, I feel very lucky and privileged because of the experiences I’ve had so far, but there are lots of things I can’t do. I’ll never be able to work full-time, I couldn’t study away from home. I’d love to live in America for a while, but that would be incredibly difficult. Even on a daily basis everything usually needs to be planned. It’s hard to be spontaneous, which sucks, because spontaneity is great!"
7. Don't feel you have to hide your condition.
"Personally I always feel it’s important to be upfront and honest about my condition. Quite often I’m coughing or having to ask them to repeat themselves because of my loss of hearing — due to longterm medicine use — so it’s easier to explain why."
"Unfortunately there will be people who might be very judgmental, and as CF is very much a hidden condition, it can be distressing when you have to explain to people you’re living with a chronic illness. Disability isn’t always obvious."
8. Battling through your condition can make you a stronger person.
"Sometimes I feel frustrated when people complain about an everyday cold or cough, because I have chest infections all year around and chronic sinus disease. CF has definitely toughened me up – I have my moments of weakness, but it’s made me strong-minded, incredibly determined, and I’m very much a realist. I certainly appreciate the little things, like being able to walk up a flight of stairs and being able to take a deep breath, and because it’s been an emotional year, I realise how lucky I am to reach the age of 24."
9. Cystic fibrosis affects your mental health as well.
10. You have some really intense conversations with medical staff.
"We don’t talk about life expectancy too much, but it’s always on my mind. I’m 25 next year and sometimes I can’t help but think, Am I already halfway through my life? We talk about my future in terms of planning a family or having a lung transplant (luckily I’m not at the stage where I need one), so that’s always an intense conversation."
11. You have to be OK with the fact that there might not be a cure in your lifetime.
"I’m used to living with CF, I can’t imagine a life without it. I wouldn’t be the person I am today without it, and I wouldn’t have met so many incredible people if not for CF. I’ve been living with this condition for 24 years, and the damage has already been done. I’m not sure if a cure would work for me at this stage."
12. And lastly, there are moments when you're living with cystic fibrosis that really make you appreciate the little things.
"I’ve been uploading videos to YouTube since May and I’ve had messages and comments from people all over the world telling me how the videos have helped them or how much they enjoy watching them. Little things like that encourage me to keep doing what I’m doing!
"Like everyone, I have good days, bad days, and all the days in between. I love, love, love being creative, so the feeling of filming, editing, and completing a video is energising. And people engaging with me is so awesome. I felt on top of the world when people said how much they enjoyed the dancing video at the hospital and the Batman video. It gives me a boost! Also, my dogs are so cute, they definitely lift my spirits – even when I’m feeling awful they are there to put a smile on my face and lick away my tears.
"And Lego. Lego is fun."