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ISN YouTube Videos about scleroderma!


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26 replies to this topic

#1 Shelley Ensz

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Posted 22 October 2008 - 04:52 AM

We are proud to announce the new ISN YouTube Video program! Our first video is by Sclero Forums member, Doris Razo. Watch it right away, so you can recognize her if some of her video(s) are in the CNN programs that air starting tomorrow!

We invite all Sclero Forums members to participate in our exciting new YouTube Scleroderma Education and Awareness program. Simply make a 5-minute or less video about your experience with scleroderma, or of an educational aspect of it of your choice, and then send an email to [email protected] telling us about your video.

We will ask for a copyright release form and give you instructions on how to transmit the video file to us. Please keep in mind all issues regarding personal privacy since nothing can ever be fully "erased" from the Internet.

Watch our first video now!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#2 Sheryl

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Posted 22 October 2008 - 06:04 AM

Thank you Doris for the You Tube experience. You did a great job. Shelley, thank you for devoting so much of your life to helping others learn about Scleroderma. You are doing a wonderful job and I for one am very thankful for all that you do.
Strength and Warmth,
Sheryl

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#3 epasen

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Posted 22 October 2008 - 06:07 AM

So great, I was just thinking this the other day, trying to find good sclero videos from YouTube and thinking of making a video for it! Thanks a lot! :)
Emmi

#4 ozzy69

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Posted 22 October 2008 - 06:41 AM

Doris,

Thanks so much for your tube experience! :) Also thanks so much for all the help you have given me.
You're Great!
Hugs,
Nina Lynn

#5 razz

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Posted 22 October 2008 - 08:40 AM

Thanks Shelley, Sheryl, Emmi and Nina Lynn.

I would also encourage any one who is interested to make a video and submit it to ISN to bring the necessary attention to scleroderma. If you need assistance in downloading or tips on how to videotape, I would be glad to help you. This was the first time putting a video together. Thank you Shelley for all your great technical assistance! I'm looking forward to seeing other member's videos and hope everyone tunes in to see CNN's program on scleroderma!


Hugs,
Razz
Live well, Laugh often, Love much

#6 debonair susie

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Posted 22 October 2008 - 09:14 AM

:) Razz,

This is so awesome :rolleyes: !!!

Do your talents never cease??!!! :D

Thank you for the offer to help any of the rest of us
With such a venture... this may just take off like wildfire ;) !!!

Loving Hugs,
Susie

Shelley,
Thank you for your part in this also...informing us of our "family member's" debut :)

Bye now...I'm going to watch Doris's video!

Hugs,
Susie
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Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#7 lizzie

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Posted 22 October 2008 - 10:43 AM

Hi Razz, welldone onthe video- it as really good to actaully hear your voice.
Lizzie

#8 Margaret

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Posted 22 October 2008 - 11:23 AM

Wow Razz...I'm impressed!!! Thank you for taking this step to do the video. Do you know what time CNN will be running this program? I noticed you kept your hands down.....

Take care, Everyone.
Margaret

#9 Shelley Ensz

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Posted 22 October 2008 - 11:32 AM

Hi Margaret,

Here's the link to the CNN program schedule. I don't know what time zones they are...people will need to check their local TV listings.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 razz

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Posted 22 October 2008 - 11:58 AM

Debonair Susie,

I like challenges and trying something new. On the Youtube video I didn't realize how hard it is to remember everything and say it all at once. I kept doing retake after retake, then it was getting late, finally I settled on the last take. It was fun doing it though!

Lizzie,

Now you get to see what I look and sound like! Yikees! Wouldn't it be cool if we could all see and talk to each other?

Margaret,

You're absolutely right! I did realize later that you couldn't see my hands, only for a second or two. The CNN segment will most likely show my hands better if they use that section of videotape. You can check the time schedule that Shelley Ensz posted above for viewing in your area.

Thanks everyone!

Razz
Live well, Laugh often, Love much

#11 Amanda Thorpe

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Posted 22 October 2008 - 12:52 PM

For once someone on youtube not making an idiot of themselves...leave that to me people if I ever figure out how to do it. People from different countries shows its a gobal disease, widespread.

Well done Razz and your hands are like mine, although I have met other sufferers I have never seen anyone with my hands. If only we could wave to each other

Amanda
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#12 razz

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Posted 22 October 2008 - 01:11 PM

Amanda,

I'm usually the one who's good at doing something outrageous and ridiculous. I thought why not do it for my fellow sclerodermians. I'm glad to hear we have the hands in common and I'll wave to you from here even though you can't see me! :)

Hugs,
Razz
Live well, Laugh often, Love much

#13 debonair susie

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Posted 22 October 2008 - 02:37 PM

Razz...& Amanda....

It would be great if we could ALLLLLLL wave at each other...I sure wish we could all be together...

for a week....in Hawaii....

in a beach house....

by the ocean!!! :rolleyes:

Let's gooooooo!!!! :D

Hugs to all of you!!!!

P S Razz....Thank you for doing the video, speaking up for those of us, not only in the Scleroderma Community...but elsewhere!

Lovin' Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#14 MaryFanPhilly

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Posted 22 October 2008 - 02:39 PM

What a wonderful thing you've done Razz... thank you. It was very brave, honest and forthright. I am sending the link to all my family and friends and will ask them to pass it on to their friends who will perhaps pass it to their friends etc etc. Love Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#15 Lucy

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Posted 22 October 2008 - 03:08 PM

Razz.
When I watched your video I startd to cry, I always feel so alone now I have feel I have met you and we are the same. I lok like you, I move like you

tthnks
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#16 barefut

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Posted 22 October 2008 - 03:47 PM

Razz ~

That is So awesome! Yay for you and sclero awareness!

I tried to use the "share" button and it wasn't working for me but when I figure it out I'm sending it to all I know.

Keep up your awesome work!

#17 razz

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Posted 22 October 2008 - 04:40 PM

All I can say is Wow! I honestly didn't realize the impact my video could have but am glad I made one! By putting a face on scleroderma and showing the full nature of its affects, I hope finally we'll get the attention we need and scleroderma won't be something people never heard of.

Debonair Susie,

A week in Hawaii sounds fantabulous! Let's all gooo! Whohooo.

MaryfanPhilly,

I feel right at home here because I know what I have and how I look is not unusual for us. Please do pass my video on to everyone. The more people who see it, the better for all of us!

Lucy,

You are never alone and please remember that. If I was able to pass that realization on to you then I am truly happy for doing that. It's interesting how we all bear some resemblance to each other in some way and because of scleroderma we have that connection. We are all in this together. You can always message me anytime you want. :D

Barefut,

Thanks for the kudos! You and Barbara do an awesome job with your blogs. I love starting my day reading your blog and drinking my coffee. For now I'm off to new ventures and projects. Who knows what next I'll pull out of my sleeve?

Lots of Hugs,
Razz
Live well, Laugh often, Love much

#18 Buttons

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Posted 23 October 2008 - 12:13 AM

Razz
Thank you for doing the video it was excellent bringing this condition more into the open. Whenever I mention it no one has a clue & that includes many of the nurses & doctors I've come across in the various departments at my local hospital.

So thanks again.

Jensue

#19 razz

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Posted 23 October 2008 - 03:58 AM

Jensue,

You are most welcomed and you're absolutely right. It's bad enough to have some unknown disease with no cure, but to have something no one's even heard of makes for a double-edged sword. At my doctor's appointment with social security the doctor had never seen someone with my condition.

Last year my rheumatologist asked if I would volunteer to be part of their annual medical school session where med. students would participate in diagnosing various rheumatory illnesses. It was a 3-hour session where about 10 groups of students, each lead by a rheumatologist, came into my examining room to guess what I had. I didn't mind since I felt they would learn first hand what scleroderma looked like. If they ask me to participate again this Feb. I most likely will.

Hugs,
Razz
Live well, Laugh often, Love much

#20 Sam

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Posted 23 October 2008 - 12:36 PM

Razz, I just watched the video and you did a great job!! Thanks for all you do. Sam
Sam