Friday, March 7, 2014

Social Media & the Black Ribbon

Social media is an amazing tool, and I am in awe of its power. It can unite thousands who thought they were fighting a disease alone; it can bring about positive social change. I am delighted to report that social media has had an impact on those in the melanoma community ... and on anyone who has skin!

I was fortunate to be part of a group representing the melanoma community that participated in a teleconference with the American Academy of Dermatology (AAD) regarding their upcoming May Melanoma/Skin Cancer Awareness Month campaign. The AAD is an organization of over 17,000 US and international dermatologists, dealing with any and all skin conditions/diseases. Its support is valued by the melanoma community (melanoma is the type of skin cancer that can be deadly), although the melanoma community has proven that we can, if we must, stand alone. But we would rather stand together!

The Orange Crush Campaign

Many may remember that the AAD's May 2013 campaign caused quite a ruckus. I understand that their intent was to draw attention to skin cancer, but in the process, they managed to offend most of the melanoma community by attempting to change our awareness color from black to orange. And yes, the ribbon color is a BIG deal to those fighting a disease or disorder. It identifies and creates awareness (just look at the pink ribbon, if you don't believe me).

The dermatologists were encouraged not only to wear orange but to throw parties with orange cupcakes and orange confetti on Melanoma Monday ... because melanoma is so much fun??? It was painful and disrespectful to those fighting and to the families who have lost loved ones to this ugly disease. We were appalled that the same dermatologists who treated our disease, who watched our warriors suffer and die, were celebrating Melanoma Monday rather than honoring melanoma patients and remembering those who could not be saved.

But it goes further than that. One major problem with educating the public about melanoma is the idea that it is "just" skin cancer. Cut it out and go on with your life ... which is far from true. So it is certainly not helpful to have melanoma thrown in as just another skin cancer. It needs to be respected and feared ... and that is just not compatible with Popsicle orange. 

Are You Listening???

Through social media, the melanoma community fought back while at the same time trying to educate the public about melanoma. We explained that black is our awareness color because melanoma actually means "black tumor."  Yes, it is depressing and sad but so is melanoma ... and dark and evil. There is nothing cheerful, happy, or vibrant about melanoma. One person dies in the US every hour from this vile disease. 

Plus, to add to the pain, orange is the color of the sun ... a reminder to many melanoma warriors fighting for their lives of how they got started on their cancer journey.  Each new "orange" event introduced during the month of May was like a dagger in the heart of the melanoma community.
We were hurt; we were offended; we struck out through our tweets and Facebook posts. Yes, we were obnoxious and loud. I confess to making a few ... okay, a lot ... of smart-ass remarks myself on Twitter and Facebook during May to defend the melanoma community and our BLACK ribbon. 

David vs Goliath

Although we were small in numbers, we were heard, which brought about our teleconference with the AAD. We used social media and brought about change ... and it will be beneficial change for the melanoma community, as well as for those who want to avoid joining this type of cancer group (which should be everybody). 

This year the AAD will be supporting the melanoma community during May because we are now working together. Dermatologists will be asked to wear BLACK on Melanoma Monday, and melanoma will be the focus of the AAD's campaign not just for one day but for the whole first week of May. Their campaign will promote early detection of skin cancer ... instead of the color orange. 

There probably will be bumps along the way, but I think we are headed in a positive direction. And thanks to the power of social media, and to the AAD for being receptive, our voices were heard and lives will be saved. Over 7,200 supporters joined a group on Facebook to wear black for Melanoma Month last year, so we are not as weak in numbers as we thought. But joining with the AAD and their dermatologists will make us even stronger and able to save even more lives through early detection, information, prevention, and research. And it feels really good!

As a follow-up to this blog and to see how it all turned out in May 2014, see

 Melanoma Mama (Jaime's mom, Donna) (Remember Jaime) (Jjem Creations) (Jjem Creations)

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