2018 International Behcets Disease Awareness Day
It is truly amazing
to watch something you would love and dream of doing, come to life.
As you guys already know, World Oceans Arts released a PSA this past Friday, May 18th highlighting a rare disease that desperately needs more attention and research. As a Behcets disease sufferer, who waited 8+ years for a diagnosis and didn’t know that Behcets existed until the day I was diagnosed, this is something that is in my face on a daily basis.
The process we went through to create this PSA taught me so much. We loosely started planning to do the PSA years ago, but then officially started to put it together Fall of 2017. We filmed it in late March, and that experience was amazing in and of itself. Being one of the leaders of the project, including the writer, plus being the lead actress in it caused me to be in this awe that we had so many people there working super hard to produce an amazing product. Then when we actually had an edited version, it was surreal!
When we released the PSA this past week, I was hoping to at least get it shared across the Behcets community. That in and of itself was a huge goal for me, because one of the main reasons I worked so hard on this was to give the BD community something they could share with their friends and family. I wanted them to be able to share this with people who don’t understand what its like to have Behcets, so that maybe they get it just a little bit better. Like I explain in the video, BD is primarily invisible to the people around us, so they can easily assume we are doing just fine when we are actually suffering quite badly. Sometimes, if we try to vocalize what we are going through, especially without being asked, the people around us can take it as attention seeking or exaggeration. Its a hard situation to be in, so I saw this video as a great in between so that there was more understanding between BD survivors and their loved ones.
I personally posted the video on my Facebook page, twitter, and instagram, as well as put it up on the World Oceans website Friday morning. I had to leave my house (for another World Oceans project actually) before I got to sharing it through the Behcets community, but it started making its way through anyway before I started on my own “look what we have made!” endeavors. By Friday night, it had been shared by many of my personal friends, BD friends, and work colleagues, not to mention all of my fellow BD patients that were sharing it. The ABDA (American Behcets Disease Association), the organization we are raising awareness/money for, shared it on the actual awareness day, as did a lot of other people. Seeing that kind of support was hard to describe, in a good way!
All in all, I am so happy how much impact this video has made, in the less than a week that it has been online. We are at over 19,000 views so far on my original post on my FB page alone, and almost 1,000 views on my personal Youtube. I wonder how many people have heard of Behcets for the first time because of our PSA...I just can’t imagine!
I want to thank EVERYONE who has helped us with this project. This includes RonVanLife, our DP, and his crew, plus my husband Stuart Erkes (my personal assistant...but is that different than any other day?), my best friend Trevis Elser(Best Scripty Ever), Tess Williams (our Barista!), and our coffee shop extras including Kirsten Johnson, Hayley Hudson, and Paul Bray. And of course, thank you to everyone who has either shared the video or bought a tshirt from our CustomInk campaign! If you haven’t yet, go over to our Print/Commercials page to a link to the campaign. Tshirts must be bought by the 31st, so do it now before you forget!
Alisa Erkes
Webmaster/Actress/WOA Extraordinaire
As you guys already know, World Oceans Arts released a PSA this past Friday, May 18th highlighting a rare disease that desperately needs more attention and research. As a Behcets disease sufferer, who waited 8+ years for a diagnosis and didn’t know that Behcets existed until the day I was diagnosed, this is something that is in my face on a daily basis.
The process we went through to create this PSA taught me so much. We loosely started planning to do the PSA years ago, but then officially started to put it together Fall of 2017. We filmed it in late March, and that experience was amazing in and of itself. Being one of the leaders of the project, including the writer, plus being the lead actress in it caused me to be in this awe that we had so many people there working super hard to produce an amazing product. Then when we actually had an edited version, it was surreal!
When we released the PSA this past week, I was hoping to at least get it shared across the Behcets community. That in and of itself was a huge goal for me, because one of the main reasons I worked so hard on this was to give the BD community something they could share with their friends and family. I wanted them to be able to share this with people who don’t understand what its like to have Behcets, so that maybe they get it just a little bit better. Like I explain in the video, BD is primarily invisible to the people around us, so they can easily assume we are doing just fine when we are actually suffering quite badly. Sometimes, if we try to vocalize what we are going through, especially without being asked, the people around us can take it as attention seeking or exaggeration. Its a hard situation to be in, so I saw this video as a great in between so that there was more understanding between BD survivors and their loved ones.
I personally posted the video on my Facebook page, twitter, and instagram, as well as put it up on the World Oceans website Friday morning. I had to leave my house (for another World Oceans project actually) before I got to sharing it through the Behcets community, but it started making its way through anyway before I started on my own “look what we have made!” endeavors. By Friday night, it had been shared by many of my personal friends, BD friends, and work colleagues, not to mention all of my fellow BD patients that were sharing it. The ABDA (American Behcets Disease Association), the organization we are raising awareness/money for, shared it on the actual awareness day, as did a lot of other people. Seeing that kind of support was hard to describe, in a good way!
All in all, I am so happy how much impact this video has made, in the less than a week that it has been online. We are at over 19,000 views so far on my original post on my FB page alone, and almost 1,000 views on my personal Youtube. I wonder how many people have heard of Behcets for the first time because of our PSA...I just can’t imagine!
I want to thank EVERYONE who has helped us with this project. This includes RonVanLife, our DP, and his crew, plus my husband Stuart Erkes (my personal assistant...but is that different than any other day?), my best friend Trevis Elser(Best Scripty Ever), Tess Williams (our Barista!), and our coffee shop extras including Kirsten Johnson, Hayley Hudson, and Paul Bray. And of course, thank you to everyone who has either shared the video or bought a tshirt from our CustomInk campaign! If you haven’t yet, go over to our Print/Commercials page to a link to the campaign. Tshirts must be bought by the 31st, so do it now before you forget!
Alisa Erkes
Webmaster/Actress/WOA Extraordinaire
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