My name is Katie Moore; I’m 30 years old and from Co. Mayo. I’m a visual artist. I love to travel, explore different countries and experience other cultures. I enjoy keeping fit, I have run 3 marathons, the most recent one being the New York City Marathon. I’m a real foodie and love to cook!
I also have Cystic Fibrosis. Cystic fibrosis (CF) is an inherited chronic disease that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. There are about 1200 children and adults in the Ireland with CF. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with cystic fibrosis lived to attend primary school. Today, advances in research and medical treatments, including in Ireland, have further enhanced and extended life for children and adults with CF. Many people with the disease in Ireland can now expect to live into their 30s, 40s and beyond. The impact of CF can vary from one person to another. There are some people with CF who live until their teens and there are others that live in to their 50’s. Ireland has among some of the most severe strains of CF and also has the highest incidence (per head of population) of CF in the world, with three times the rate of the United States and the rest of the European Union. However it is important that we now have a network of centres of expertise in place and dedicated multi-disciplinary teams lead by specialised CF consultants.
I was diagnosed with CF when I was 6 months old, my family and I were living in America, I was born there. When people ask me ‘what is it like living with CF?’ I sometimes think ‘what is it like not living with CF?’ I don’t know any different, this is me, I’m 30 years old and have always known I have CF. I’m a very positive person. I look after myself really well, I don’t drink or smoke, I eat very well, I try to exercise every day, and I take all my medications. I’m determined to keep myself as healthy as possible. I attend hospital clinics every few months in both Beaumont Hospital and Mayo University Hospital.
CF is known as an invisible illness, to look at me you would never know there was anything wrong with me. You wouldn’t realise I can’t work a regular 9 to 5 Monday to Friday job due to my bad health. Taking my daily medications and doing my treatments is like a full time job. You would never know that I have a lot of pain, sometimes in my joints, sometimes all over. This can be very difficult when dealing with people and their lack of understanding. You can’t judge a book by its cover.
Due to my CF I have to spend a lot of time in hospital, or at home, taking medication, doing treatments and getting rest. This means I spend a lot of time by myself which can be very difficult, you worry about missing out on life. Although my brain wants me to be doing everything, I have to listen to my body and rest. Using the power of positivity I have learned how to be at peace with my illness. It is very important for me to acknowledge the situation I am in (which can be pretty crap at times) and then know that I can deal with it.
Of course I have bad days where my head can be full of negative thoughts; my CF can cause me terrible anxiety and worry. The best thing for me to do is talk to someone about it all, once my worries are shared I realise I can deal with them. I have been in the depths of despair with my CF, but I have been able to overcome it and feel so blessed for it. Being happy and positive is fundamental to my wellbeing. I sometimes write lists of all the things that make me happy and make sure I’m doing them. I surround myself with positive people; I have no time for negativity, or unnecessary complainers!
I spent a lot of time in and out of hospital growing up so I missed a lot of school, which resulted in me having no interest in school. I have always been creative, painting, dressmaking, I loved it all! After school I worked in the fashion industry hand sewing, for designers Philip Treacy and John Rocha. I got to work at London Fashion Week, it was great fun, but I would always have set backs with my health. I decided to go to college as a mature student; I studied Art and Design at GMIT Galway and then went on to do an honours degree in Design in Textiles. I really enjoyed my time at college. I became unwell during my studies but I was determined not to give up; I had to work from home in 3rd and 4th year but managed to get a first class honours degree. My college was very understanding and so supportive.
I have used my experiences of hospital isolation and living with CF as inspiration for my artwork. I feel very lucky to be a creative person. I see things and notice things other people may not, combine that with the empathy living with CF has given me, all helps in creating my artwork. I use textiles, stitching and installation in addition to drawing and video to create visual experiences of the world. My work is very conceptually driven, every stitch has a purpose. The work I make comes from a feeling of being compelled to make it, giving the topic a voice, telling a story, an act of memory.
I have so much to be grateful for. Because of my CF I appreciate everything that I have, especially the everyday things, like being able to walk, talk, dress myself, have a roof over my head – these are important things that maybe if I didn’t have CF I wouldn’t give it a second thought, who knows.
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