D, CF & Me

So May is CF awareness month, I am 19 and have Cystic Fibrosis, I also have a 2-year-old little girl, I'm not going to lie to you having CF and being a mum is not easy if anything it's bloody hard but it's so so worth it. I wouldn't change it for the world. So what does CF mean for me as a person? Well, it's obviously a massive part in my life but I try to get a positive out of anything I can. CF is not easy and from the outside, it may look like nothing is wrong but inside everything is effected. It doesn't just affect you physically it also puts a huge stress on your mental health, the dreaded thoughts no one should have to live with thinking about, seeing your friends pass away because of a disease that you are also living with every day of your life, constantly thinking about when the next medicines are or if you've got any appointments coming up, no one sees how it truly affects the person in every aspect as well as all the people around them becau...

I’m Sasha and I have Cystic Fibrosis. I was diagnosed with CF when I was just 5 days old due to being 6 weeks premature and having a blockage in my bowels. I had a pretty healthy childhood, was a chubby little baby and I was always active. When I was 8 years old, my weight was so severe I had weight 2-3 stone and I was struggling to fight infections so they decided I needed a food tube. I had my mickey button until I was 14. It wasn’t until I was 14/15 years of age when things started to deteriorate and started changing my life slowly. I was so fed up of living the life I was living, I started missing medication and wasn’t keeping up with chest clearance. It got the better of me. When I w ent into year 11, I picked up a little but it still wasn’t the best. I was in hospital very sick when my GCSEs had started and was in hospital for the period of the time from start to the finish of my GCSEs and unfortunately I wasn’t allowed to re-sit them so I left school with no GCSEs and all m...

"3 words to describe living with CF?"                      1. hard                      2. tiring                      3. limiting "How many different medications do you have and when do you take them?"                      I have eight different tablets and two nebulised medications that I take everyday. I have seven different tablets in the morning but the majority are two or more tablets for each different one, then there's three different ones at night. I take Creon with food and I do the nebulisers in the afternoon with physio. "Did you know you had CF as soon as you were born?"                      No, I was diagnosed with CF via heel prick test when I was 4 weeks old. "What's the hardest thing ab...

How & When We Met: I met Shannon in comprehensive school, we were in the same form class, so met in year 7. We didn't really interact until year 8, this is when we started becoming friends, I questioned why sometimes she was in the little meeting room in form and why she got to stay inside some days and she explained that she had cf. Of course, I'd never heard of this so when I got home that day I did a little research on what that was. Becoming Friends: We started off as mutual friends with Amy, I'd known Amy from primary then Shannon and Amy became friendly and of course, we became friends too. We had sleepovers and went out. As me and Shannon became closer Amy became more distant. We were all still friendly with each other and still are. Shannon and I seemed to share more interests. My Understanding of CF: To my understanding, CF is a genetic disease that 1 in 25 people are carriers of and don't even know it. It is described as an "invisible illn...

This post was originally posted in 2015, I've added a little bit to the beginning to show why wishes are so important to kids with life threatening illnesses but the story remains the same. On August the 19th in 2015 I had one of the best days of my life. I met the world famous beauty blogger Zoe Sugg, AKA Zoella.  I had this opportunity thanks to Rays of Sunshine. They are a wish granting company similar to Make A Wish and back when I was 15 Zoe Sugg was one of my idols. RoS ask for three wishes and this was one of mine, I'm grateful now that this was the one that happened as I don't know what I would have done had I met Demi Lovato (she sent me a signed photo though!) and my other wish was to go spend the day at BBC Radio 1 but they couldn't do that one either so I got to meet Zoe. Things like this make CF okay. I have friends who wanted to go to America and swim with dolphins, I've had friends who've met Niall Horan (very jealous of them!) and I ...

Anyone who knows me, knows that I am always talking about where I want to travel next. I love traveling. I enjoy experiencing different cultures, environments, and trying something new. My family  taught me to not let cystic fibrosis get in the way of my desire of wanting to see new places.  Look, I  understand that traveling with cystic fibrosis can be very overwhelming. Packing medications, planning  for if an emergency occurs, or even when having to go through security with all of my medical  equipment can be stressful. I’m not here to say how to pack for a trip or what to expect when traveling  with CF, but rather tell you what I have learned. Before university, I never traveled by myself, I always had family or friends with me. The  thought of traveling with all of my medication by myself daunted me. I was used to having the  assistance or the company of my family. The first trip by myself, I did not need the push of people  telling...

I was diagnosed with Cystic Fibrosis when I was just 3 weeks old. I was diagnosed with Pseudomonas when I was just two, this was the start of endless treatments and IV antibiotics. It was also the time that I refused to eat and needed to have a tube put down my nose to feed me. This was my life for many many years (the tube was changed and I had a permanent one placed in my stomach when I was 5).  I didn't know anything different other than taking tablets, doing physio and having IVs every 8-12 weeks. It was my normal. I stayed pretty stable for quite a few years. My Lung Function sat around 40%. It was low but I carried on living. It wasn't until I was 16 when my lung collapsed that everything changed. In April 2010 my left lung collapsed, I stayed in hospital for 3 weeks with a chest drain in. The day I was discharged (I got all the way home from London) my lung collapsed again. This time I had to have surgery to try and stop it from going again. By the time I was dis...

This post was originally written in 2016 by Danielle Jones who passed away November 2017. Life with Cystic Fibrosis. It has its good and bad times. I was diagnosed with CF at 9 weeks old. I was pretty much in hospital for that whole 9 weeks due to being so poorly.  As the years went on I was still very healthy, lung function would be about 80% or over, my weight would be brilliant, the only time I ever stayed in hospital was for my 2 weeks of IVs as mum wasn't trained enough at that time!  I only ever needed IVs like 3 times a year so that was nothing. In 2010 I needed a port fitted due to my veins being rubbish, that was the best thing I ever did!  Life carries on being very good and healthy I then had my wish, I went to London for a few nights to see high school musical live! Also Madame Tussaud's and sea life center, it was brilliant and I had a lovely time!  I used to always go abroad a lot too, like every year to different places so if ever ...

"But you don't look sick!"                     Thanks for the compliment? "Maybe you did something that triggered the illness."                     Sure. Thanks. I feel great now. "I know exactly how you feel."                     I'm pretty sure you don't since you don't have a chronic illness. "My friends, mothers, cousins, daughter died of CF."                     Wow. Thanks for telling me. I really appreciate that. "It could be worse! You could have cancer!"                     Listen, all illnesses are bad, it's not a competition so PLEASE don't say things like this! "Just think happy thoughts!"                     Oh, thanks. I'll definitely try that. I'm sure it'll get rid ...

Hello, I am Liv and as a 17-year-old, I have had my fair share of experiences in education, throughout primary, secondary and now college. Although my cystic fibrosis has not really had much of an impact on my lung function until the last few years (where I have fought several fungal infections that are still affecting me to this day), my digestive problems have affected me massively which caused me having to use the disabled toilet in primary and high school due to comments being made by other students which has had a big impact on my self-esteem. Speaking of self esteem, obviously in high school people can be petty and very ignorant to differences, I started to get bullied with people saying I was faking my illness, they hoped that I died of it soon and other things such as those - causing me to move schools where I lived the best 2 years of my life so far, raising over £500 for the CF Trust and making friends that I know will last a lifetime. Like many CFers, attendance at...

This post was originally posted on my Instagram on March 17th, 2016. @shannonjamesphotography / Instagram, 2016 If you were sat in one of these seats and a young person, maybe a teenager coming home from school, asks to sit down, would you get up if it looked as if there was nothing wrong with them?  You said "No."  Am I wrong? Most people will say no because their definition of "disabled" means being in a wheelchair or being physically or mentally stopped in some way. A disability isn't something that you can see sometimes.  There are many disabilities where the only hint of anything wrong will be absolutely tiny. I have two "invisible illnesses." I have Cystic Fibrosis and Diabetes. I would be more than happy to guess that if I was stood up on the bus with no seats anywhere, I wouldn't be offered the seat. If I asked, the person already sat down would probably say no.  Just because you can't see that someone is disabled, doesn...