By Robin Dopoe – June 21, 2017
June 19th was World Sickle Cell Day. And since 2008, this day has been held annually in order to help increase public knowledge and raise awareness of Sickle Cell Disease (SCD) and the struggles sufferers and their families go through. One of such persons affected by this life-threatening disease is Liberian model turned philanthropist, Mapillar Dahn, whose three daughters suffer from SCD.
Since 2015, Mapillar has been on a mission to increase public awareness of sickle cell anemia as well as provide support to families, like hers, who are affected by this disease.
And during the celebration of the World Sickle Cell Day, Daily Observer caught up with this busy mother of three for a quick interview.
DO: Ms. Dahn, you’ve been very busy. But first, how are the girls?
Mapillar: First of all, thank you for this interview and for using your platform to create much-needed awareness about sickle cell disease. The girls are doing great in spite of their sickle cell disease and are growing up way too fast.
DO: We are so glad to hear that they are well. Let’s jump right into this because we are curious about the frames you had everyone using on Facebook. What is it for and can you tell us how they came about?
Mapillar: Absolutely! The frames were designed as a way for the world to know that June 19th is World Sickle Cell Day. What ensued after that was just totally mind blowing. The response of the sickle cell community to the Facebook frames has been phenomenal and it is a testament to the fact that people have been beyond ready for something so simple yet very important.
It has given patients, caregivers, advocates, and well-wishers a sense of identity. People are getting so many friend requests on Facebook just from the frames.
It feels really good to see all of the statuses about the new relationships being cultivated due to the frames and I’m so honored to be a part of that.
It took a while to get approved by Facebook and I wasn’t sure if they would approve it by June 19th, but as I speak with you, about 6,000 users have applied one of the frames since June 14th.
And it’s crossing over to other social platforms. It was a little touch and goes there for a second, but I’m so glad everything worked out and now we are encouraging everyone to frame up for sickle cell in honor of World Sickle Cell Day.
DO: That is truly amazing. Why was this so important for you to do?
Mapillar: Well, for me it’s pretty simple. I tell people that sickle cell disease is my life. I do not have the disease, but rather the trait, however, all of my 3 children have the disease. In the United States, about 100,000 people suffer from this disease and millions more around the world.
Our people are suffering every day and sadly, they are dying. For as long as the world has known about this disease, it is quite an injustice and disservice to the world that so many do not know much about it and very little is given to foster the spread of knowledge and or research.
This frame was a way to not only unite the sickle cell community but to also show us that together we are unstoppable. Even though we may feel like the world is not listening to us or seems not to care, we know that awareness starts with us.
Action starts with us. No one can tell our stories better than ourselves. And this frame proved that. I had a personal goal of 10 thousand users and we were able to surpass it! It wasn’t easy and by the last day I wasn’t sure that it was going to happen, but the community pulled together, kept sharing and encouraging family and friends to join us in our endeavor.
Close to 2 million people saw those frames. And that’s only on Facebook. If we can do that, I feel like we can do bigger and better things for the sickle cell community throughout the world.
Mapillar Dahn is definitely a woman on a mission and her actions speak louder. She visits community fairs with her girls to hand out educational material about sickle cell disease, she sponsors children battling sickle cell disease to go to a week-long summer camp, she provides parking passes and food vouchers to families at sickle cell clinics, and more. To learn more about the amazing work that she does through her foundation, MTS Sickle Cell Foundation, please visit www.mythreesicklers.org.
Source: Liberian Daily Observer