My name is Lucy Crisp, I’m 20 years old and originate from a small town in Derbyshire. I was diagnosed at a few days old with a long term genetic condition called Cystic Fibrosis (or CF). This life-threatening condition causes a build-up of thick, sticky mucus on the lungs and on the pancreas, therefore several processes are affected such as digestion and as expected, the respiratory system. According to the Cystic Fibrosis Trust, over 10,000 people in the UK have the condition and one in 25 of us are carriers of the faulty gene. I’ve always assumed its originated somewhere down the family tree, however, we’ve not been able to identify who else was or is a carrier apart from my parents.
On a day to day basis, Cystic Fibrosis is a struggle and it does, at times, feel like a burden on my shoulders. Since my recent diagnosis of Cystic Fibrosis-related diabetes, that burden has only doubled. This recent diagnosis affects 1 in 3 people with CF is caused by the build-up of mucus affecting the secretion of insulin until the pancreas physically cannot produce insulin. This type of diabetes is described as a mixture of type 1 and type 2 that only CF people can develop. It is hard to monitor blood glucose, even when you’re injecting yourself with insulin and counting the number of carbohydrates in your food.
When you have this routine to do on top of taking Creon tablets with any food that you have, taking vitamins in the morning, doing physiotherapy and your nebulisers twice a day, trying to keep up with your surroundings and hospital appointments, it can become very exhausting. It also has a huge effect on my academic and social life. However, I am very lucky that new medications are coming out to increase my lung function, such as Orkambi, Symkevi, Kaftrio and Kalydeco. Because of my delta F508 gene, Kaftrio, Symkevi and Kalydeco have been the ones that work for my gene mutation. I started off with Symkevi and Kalydeco last January and have only just been taken off Symkevi and put on Kafrtio, whilst still being on Kalydeco. My medications have been changing more frequently, however, I am very grateful and I hope that my lungs do strengthen with them.
I’m normally okay talking about my condition, but there are times where it is hard to open up about CF because you’re always asked “will you get any better?” and you have to break it down softly to the people that you love that you will never get any better… the condition will only progressively worsen as I get older.
I do believe that in 2021, we have a growing society that cares and recognises what other people go through on a day to day basis. However, in my opinion, sometimes it can be insensitive by those who ask “why do you need to use a disabled toilet when you obviously aren’t disabled?” when they have only acknowledged how you appear on the outside and not on the inside. There are people in worse situations than myself and I’m lucky to be currently healthy, but I believe that whether a person has an oxygen tank attached to them or not, or whether a person is in a wheelchair or not, we shouldn’t judge a book by its cover.
Like many others, I try to think positively about life and I’m really lucky to be surrounded by friends and family. I love my friends because they accept me for who I am and don’t think twice about being friends with me because of my medical condition. They know the struggles of what I go through with my condition, and they take into consideration what I can and cannot do.
I can talk about anything with my parents, and they have witnessed me grow as a person, helped me to understand the condition I live with and support that I am open about my diagnosis of Cystic Fibrosis. They cherish and love me to pieces, and took really good care of me when I kept having hospital admissions as a child. I’m not exaggerating when I say, I don’t know what I would have done without them and I still don’t know what I’d do without them.
The COVID-19 pandemic has changed me as a person and given me a different insight into the world, however not a lot has changed for CF people like me. Any person with CF cannot be in a shorter distance than 2 metres of each other; I’ve never received a hug from anyone, nor been in a relationship with someone that has the same condition as myself.
The virtual world is our alternative… its amazing to be in contact with a lot of people who have CF; I feel that with everyone being at home right now it is good to know that I am not alone in shielding and that people are in a similar situation to me. There are also support groups on social media platforms, such as Facebook, for parents of those living with Cystic Fibrosis and those who have the condition as well. I’ve met a lot of people through Twitter and Instagram with CF, and there are amazing shops as well as supporting the condition and donating money to CF charities.
Claire Wineland was an amazing YouTuber and activist who spoke on her struggles with the condition. Sadly she died in 2018 at age of 21 after having a lung transplant a week earlier, and she was an inspiration to the community. She did so much during her lifetime. People like Claire inspire me to live life to the fullest.
I don’t like to limit myself to what I can do on a day to day basis, I try to do as much as I can and always strive myself to do well. In terms of sports activities, I do feel it is important to do exercise however I normally opt for activities where I will not exert myself too much. If I was to take part in a running competition, I’d definitely become more breathless quicker than a person without CF. I wish I could run a marathon or at least be better at sports, anything is a possibility and its still possible in this life.
I do like social activities with my friends and family, but I didn’t tend to go out as much before COVID. I opted for spending my time for ‘going out’ on more special occasions rather than getting ‘absolutely bladdered’ most weekends for the sake of it. I think social events such as clubbing are hard because everyone in your group is expected to be drunk but I would still be consciously thinking of my diabetes because too much alcohol could make me unconscious as the alcohol causes blood glucose to drop dramatically.
Therefore, I would end up being the mother of the group and looking after everyone else who was in a terrible state. And the same goes for smoking – you see all your friends do it and there’s the temptation. Personally, I choose not to smoke and I never have because I don’t want to make my lungs worse but that’s my reasoning. I think it’s down to preference at the end of the day.
I think once the pandemic is over for me, I will be going to any concert I can, any night out with friends, any social event with family because I think I did sometimes take things for granted and the pandemic has made me realise that I should make the most of every opportunity that is offered.
If you’re a young CF person currently reading this, you’re doing absolutely amazing and I’m so glad that you are still here with us. Please, I encourage you to take your medication, look after yourself and let people who you trust know how you’re feeling… the world would feel different without you. From one CF person to another, don’t let the world tell you that you’re limited to what you can do in this life because if I can make an impact, so can you.
If you have a friend or loved one with CF, do learn about the condition and CF-related diabetes, because anything can happen unexpectedly to a person with CF and you need to be mentally prepared of that in the case of an emergency. I have a card that I carry with me at all times that explains who to ring in case of an emergency and the phone numbers of my CF Ward.
That would be my first port of call if I was the person dealing with me. There are many websites about the condition too and I’d definitely consider supporting the Cystic Fibrosis Trust in any way you can, whether that is donating if you have the spare money or sharing posts on social media about the condition. Please ask them questions, but do consider that they may not feel ready to tell you everything because, from experience, it can get overwhelming for a person to talk about it.
For more information about Cystic Fibrosis, go to https://www.cysticfibrosis.org.uk/