Hey everyone. Now you are all probably wondering what this thread is about. Well some people already know about this but lately I been getting a little worried. My breathing has been growing worse. Now this has been going on for about 2 months now but very recently I been randomly stopping breathing for 5 seconds then breathing again more and more when not doing anything. Now most of you guys won't know this but its time to tell something about me that I hate saying and yes I do regret this but I think this has to be told to everyone as I feel like this is going to affect my activity. So when I was born i was a normal girl, had lots of friends and that. Then at the age of about 8 or 9 I went to holiday to Spain with my family. Then it began. My brother who is 2-3 years older than me started having purple spots around him. We thought it was just a heat rash so we just left it. Now knowing my mum when we got back she took my brother to hospital for a check up to see what they were. Now this part and moment changed mine and my brother's life forever. They ran tests and told us he had a life time condition called dyskeratosis congenita. And I had no idea what it was so i wasn't so worried. Then about a week later I then had tests and found out the same thing. I had this condition. (Now wait you guys probably will think, 'Yeah so what? It can't be that bad?' Well guess what it is rly bad...) Basically this condition is a rare bonemarrow failure condition but it can also put me and my brother in risk. We have a higher chance of progressing life threatening conditions (which I don't want to mention because of how people can get effected by it) and there has only been 400 cases of people having this condition around the world. (Yes. 400people so far has had this condition) So things happened and that. Now I haven't been affected by it as much as my brother until 2 months ago. I started to have breathing problems. Random times I would stop breathing for a couple of seconds but it was rare for it to happen. Now about a month later I had to tell my parents then after I did we went to hospital. Now I did have lung function test and was a bad result (it always has been) and then have a xray which didn't come out clearly. The doctor thinks I may have an life threatening condition called pulmonary fibrosis. Now I expected this as well because it is likely for it to be as one of the life threatening conditions I can get is pulmonary fibrosis. It can get worse over times and already shown to me it has. (More info look on google not bothered to explain) And with this happening and my breathing problem getting worse I do feel soon I will have to tell my parents about how much common this is getting meaning I may cant come on as much. Now thats basically it but truthfuly I just wanted people to know how hard I can find it to come on and how risky it is for me. I must admit I am scared, I have been scared since I found out that I have dyskeratosis congenita. I want to thank you so much for reading this and hope you understand all that happens and if I cannot be as active with all this happening right now. It has been hard writing this as it does bring back bad memories but I'm glad I found the courage to tell everyone and talk about this stuff as I never get the courage to say this stuff to people in person or typing. Thank you guys so much for being awesome and you guys are just great friends. ~Senpai
You will get through this, we are all here with you. If you ever need to speak to anyone I am here and I am sure others are too.
This is really hard to read omg Senpai you can do it, dont give up and stay happy, dont let negativity effect you even though it may be really tough to just stay strong, We all care about you senpai <3
Thank you so much guys, it feels great that you will always be here for me and what ever situation I am in I will remember all you guys and then I can remember to stay strong for you And so glad you guys understand it has been hard
I haven't been active to know what was going on with you but this thread helped me understand. We are here for u senpai Always <3
Aww thank you guys Another fun fact i forgot to mention about my life time condition is that male to female is 3:1 x.x yes girls having it is like rarer than boys o.o x.x'' :O
Girls are also less likely to have colour blindness than boys. We also have a higher pain tolerance than them (Myth Busters tested this with a few perfectly innocent people, torturing them just to find out. Girls lasted about 20 seconds longer than boys on average). Anyways, good luck. As the others have said, we're here for you.
dang.. i never knew that. I thought my oxygen level i had a few years back was bad. (84 Percent) but that's really rare sickness. I've never heard such a sickness that would do such a thing. Well Mesothelioma i think was the one. But anyways i still wish the best of luck and maybe this problem will be resolved and done with so nothing happens. i fear that it may end your life. You fear that too. So does everyone else. We're gonna be here for you regardless good luck friend. *Holding back tears irl*
Thank you life And yes I fear if I do have pulmonary fibrosis then i won't live for long to prob not have a future and a job. It is hard to believe it but it is hard to go through this. I am worried sick and I just hope I have so many memorable memories to treasure in my life And I want to complete my dream by inspiring people around the world no matter in what situation I'm in because I want people to have a great life and be inspired by words that can live on in their thoughts and something they can keep as a jewel. It is scary going through this but with you guys i'm going to stay strong
It just seems heartbreaking that ordinary people have to go through such a struggle. My cousin is a jolly kid, you would think he is fine yet he has a lung condition which dramatically decreases his expected lifespan
Honestly, I'm in tears. It pains me so much to know that people have to go through this. I thought I had it bad in life, but deep down I always knew that there were people much worse off than me. Don't worry, Senpai, we're all with you. Everyone is supporting you, and no matter what happens, we're behind you. I wish you the best of luck in whatever struggles are to come, and I hope you take care of yourself. Do what you have to, no one minds. We all understand if you can't be active because of these sorts of situations. Look after yourself. <3
