Why I Don't Talk About Life Expectancy | Cystic Fibrosis
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- Опубліковано 8 вер 2024
- This is the reason I don't talk about life expectancy in any of my videos or on my blog. I would hate to be the one to cause any detrimental harm to anyone else. Please remember that this is just my opinion. If you can relate to this or even agree to an extent, then please let me know I am not the only one!
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I don't have CF, I have chronic illness which is debilitating and has taken ne away from my old life, but no my life expectancy is not affected. I'm lucky. that probably seems really random, like why am I rambling about my non life threatening chronic illness right? well that said, I think you honestly don't jwe ANYONE any explanation for why you don't talk about your life expectancy. mental health is hard enough for the average person, chronic illness makes it harder and I can't begin to imagine how much mire difficult it must be for people with CF. I think your reasons are 100% valid, and it's really brave of you to share. I know I'm not a CFer or anyone with a life threatening or terminal illness, but as a spoonie I'm thinking about you and sending you so much hugs and strength. 🤕💖🔥
Hi Kate - first time watching one of your videos. Just have to say, your energy is infectious and so positive. I'm a 21 year-old CFer and I just want to thank you for this video. The whole "life expectancy" thing has always hung over my head, made me feel like my clock's ticking much faster, headed for a quick trip to the exit, etc. But you just said so much stuff that really resonated and made me feel better. I'm located in the US and my doctor said he thinks that we're going to have the new triple therapy by the end of the year, we just have to hold out a little longer. Thank you for your words.
Your message has just made my day! I'm so glad that it resonated and helped in some way. I'm very passionate about this subject and why I don't talk about it, so the fact you can relate really means a lot. Also the news that the triple combo drug will be with you this year, is super exciting!!! I hope you are keeping well 😊
As a 34 year old CFer i can only so agree to 100 % with that! That damn topic gets me freaking out all the time! Everybody can die every day, you don't need CF for it..
I'm so glad you agree too! There is just no need for it.
I have Cystic Fibrosis and I struggle with my mental health and this life expectancy thing is hard to think about.
But I think this video was amazing, the bravery you showed in talking about really personal to you and the emotion you were willing to show in front of the camera. That’s truly inspiring💛I hope your keeping well & happy, you seem like a very genuine & lovely person
Harry Walters oh wow! I’ve just seen this comment! Thank you, I really appreciate it, especially on this topic which I’m very passionate about! It’s something that I’ve wanted to say for a long time too. So it means a lot to hear that from someone else with CF!
(P.s only one day left of admission!! 🙌🍻)
Kate Eveling Hahaha yess counting down the hours!!🤞🏼😁
OMG Kate I love you sooooo much, I can’t get enough of your positivity! I am going through few minor health problems and I felt really negative about my life today, but watching your video, oh my! You are ray of sunshine, you soooo brighten my day, thank you! I can only imagine how proud your mum and dad are!
Thank you so much Nicole!! I really appreciate your comment, and I'm super glad the video has helped! ☺️
Thank you for that positivity mam😇 I'm from and my girl is a CFer . I think this video will put a lot of positivity inside her✌️😘
Thank you Merwin, I'm glad to hear it has helped in some way! I hope she is doing well! 😁
@@KateEveling well we are soughting it out mam... I'm just giving her positive thoughts... We are trying fulfill every thing from her bucket list... Lots of love to u from India
My daughter has CF diagnosed whilst still in her mothers womb, she is a similar age to you and I couldn't agree more with your thoughts .... the impact both on a child and parent when this information flashes into news, current affairs, music videos etc is challenging! We learn to live with and embrace CF holding onto the positives but sometimes when this headline appears when your guard is down it is in my opinion wholly detrimental. Great video keep them going
Kate! I love and respect all your points on this topic and as a fellow CFer in some ways I agree with you and in others I don’t...I would have to agree as a CFer in my mid-20s that thinking about life expectancy is a super depressing burden of negativity that I just don’t need to deal with and while it makes me appreciate life more it took me a while to not be simply upset and angry about it and the way that this fact could affect other teen CFers in their mental health is really scary and I don’t think it’s helpful. HOWEVER, I do think being realistic about the disease and future drugs and treatments is very important which I don’t feel this was and being unrealistically positive about the outlook of treatments just gives those still learning to mentally deal with what having CF means false hope which can be just as damaging in the long run. Let’s be real, with the exception of the use of selective breeding there will never be a cure for CF and even with selective breeding new mutations could and would occur. No matter how advanced our understanding of DNA and genetics become there is no way to replace a mutated gene with a healthy one in every single cell of our bodies. I hate when people say this because it gives off unrealistic expectations and Miss represents what research is doing. If you are referring to a cure as a management treatment such as a universal modulator that can correct the function of every CFers mutation...yeah, maybe someday-in the far future as we are discovering thousands of new mutations and reclassifying others every year. But a true cure, as in the complete and total eradication of the disease or a one off treatment for those of us afflicted that completely fixes the CFTR gene and doesn’t require management isn’t realistically possible and we need to stop pretending that it is so that focus and hope can be placed on what science and research actually can do for management and treatment of the disease. I truly feel that focusing on what’s realistic is important to the wellbeing of everyone affected by CF and sugar coating it or claiming that a cure is near when it absolutely is not (people with rare nonsense mutations like mine don’t even have a modulator in DEVELOPMENT yet) is just going to give people false hope and expectations and that can be very dangerous and damaging down the line.
I totally agree with you! Putting numbers out there like that is so damaging. Sharing this!
Rosie Jolly thanks so much Rosie, I’m you glad you agree! I really appreciate the share ☺️
Well done you for such positivity. My granddaughter is 23, has CF and does a lot of fundraising to raise awareness. I just sent her the link xx bless you xx
Your a true inspiration Katie your glass is half full not half empty. Down here in Devon there was a beautiful girl with CF called kirstie Tancock and I really believe She changed peoples perceptions on CF
Wow thank you so much Ryan! That really means a lot. I've never heard of Kirstie but she sounds inspirational, and a true fighter of CF.
Thank you Kate. You are so articulate about this and it’s such a great stance. I’m excited too. I don’t want to give LE a platform in our lives, so I choose not to put it there too. 😊
InfamousGreggyG thank you! I’m so glad you agree too! It can be a delicate subject but I think it’s important for people to hear this message! 😊
You're amazing Kate! I love your videos! You're so real and I hope young people with cf stumble across your videos and it helps and inspires them :) Thankyou for talking about something that must be very hard to talk about xx
That really means so much!!! Thanks so much Alyssa!!
Hey the life expectancy of CF is probably the same life expectancy of an asthmatic