I Am Cystic Fibrosis and I Am Not a Limitation!

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IAmCysticFibrosis

New member
Greetings all, I have been watching this website for a few years now. Never to post, never to register, only watch. I've read things that have inspired me, and things that just broke my heart, as well as things that scared me.
I have Cystic Fibrosis, and have notice though there are a few small but very strong communities, they are unfortunatlylike anything small, not well known. I want to change this, I have seen Youtube do amazing things to bringing awareness and while there are a few videos of Cystic Fibrosis with a decent ammount of views (100,000+) but compared to many things now, this is next to nothing. I have formed a channel dedicated to Cystic Fibrosis which is about the following
-Growing awareness
-Remembering those who have passed
-Sharing real life strugles
-And motivated others with CF
I do aplogize that my first post here is about promoting my Youtube Page, but I hope that when people see what it stands for, it will be ok. I will post DAILY videos! And will not rest untill Cystic Fibrosis gets the attention it deserves!
If you're too shy to post a video of yourself, that is fine! But please like, subscribe, comment, and share. These four simple things will do so much to move this page forward! I do need videos though, clips, and interviews. I am VERY serious about this channel.
<a href="http://www.youtube.com/channel/UCbCpL3fKVvvrC9xZFrQVdjg">http://www.youtube.com/channel/UCbCpL3fKVvvrC9xZFrQVdjg</a>
I know it's not much to look at right now, but there is one video, and some information about the channel. In the next few days I will finish all the info, and channel desgin.
Thank you, and God Bless...
 
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IAmCysticFibrosis

New member
Well, it would be a shame for this to be locked/deleted/ignored. I truely am not trying to advertise junk here.

And I noticed this has had about 30 views, but one reply, and my video has only had 5 views. It's really a shame, I was hopping for more support. I suppose it will come when people are ready.

I hope people could at least take the time to watch the video, if they cannot be bothered to reply or anything else, at least do that.

Again I understand this being my FIRST post, and it comes across as a "hey look at this" kind of deal, may make me seem like a bot, troll, or what have you. But I am trying to do something, and need help.
 
2

2005CFmom

Super Moderator
Welcome Mark. I watched your video and thought that you must be from the IE when you mentioned San Diego and LA being the closest clinics. Image my surprise when I clicked on your profile and saw you live in SJ. I grew up in SJ! Anyway, welcome and keep up the good work!
 
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nocode

New member
Mark (the first Mark) hehe,

Thanks for posting the video and taking the time to try to go forward with this idea and raise awareness for CF. I was a bit touched by your post where you say that you're sad that 30 people have read your thread but only 5 watched the video. I have actually not seen the video yet, despite appreciating your efforts, and here are my reasons:

- As a CF patient, I am still afraid to come across things that will make me too sad, CF related. For example, I feel like crying when I look at photos of other people with CF. I am not able to watch movies or documentaries involving CF either because I know it'll make me too sad. I have still not accepted his illness and it's taking me a lifetime to come to terms with it. I still feel sorry for myself for having CF, that's the reason why I feel like crying when I see pictures of other cf'ers. It's projection.

I hope this helps to shed some light into why some people might say no to watching your video. Please don't take it personally. It's just difficult to get involved, even as a patient.

Again thanks for your efforts and for putting it out there.
x
 
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IAmCysticFibrosis

New member
Hey guys! Just wanted to update and first thanks for the kind words and glad to see that I didn't come across as a troll or bot.

I wanted to take things a different direction and do something Fun! So I uploaded a new video with me doing voice impressions. I hardly coughed which was great for me personally, and thought it would be fun to show something morel lively!

Two Marks, can't have enough brother!

And I know CF is a real down bringer, and I have no intention on making my channel all about that, infact it's more focused on showing the postives, of what we can do, and that we are just people too!

Well again thanks for the comments, support, and warm welcome fellows!

Check out out the new video, it's voice impressions!
 
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