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Features and Interviews

Apr15

Derek Canas's story

Wednesday, 15 April 2015 Written by // Samantha Categories // Samantha, Features and Interviews, Legal, Living with HIV

He was infected as an infant via a blood transfusion, but not diagnosed with AIDS until 16 years later. Derek, now founder of the #endthestigma campaign, tells his story to Samantha for PositiveLite.com

Derek Canas's story

Meet Derek Canas from Brunswick, Georgia, a man with a story. Intrigued, I recently talked to him for PositiveLite.com.

He made his entrance into this world in 1984. Derek, who is now 30, was born with a rare heart defect and his life expectancy was expected to be no more than a few months.

At three months of age  Derek underwent open heart surgery and unbeknownst to him or his medical team, he contracted HIV during multiple blood transfusions.

Derek explains how everything was fairly normal except for having a pacemaker. "I was three months old  when I got the first pace maker. I was sick three to four times a year with bronchitis and pneumonia. My family always voiced concerns over my height and weight. Their fears were calmed with the doctors' simple explanation "he has a heart problem, he will always be small". 

Other than the concern with Derek's frequent illnesses and his weight and height Derek had a happy childhood. "I survived 16 years undiagnosed. I was going to a doctor for growth hormone shots. They helped me gain 50 pounds and grow over a foot to 105 pounds and 5 feet tall. The call to get tested came after a medical student noticed that I had never had an HIV test. I had one and my worst fears came true."

 

What changed? "Lot’s of medicine and testing for things with big words that sound scary. People in the community did turn away from me because of the misinformation about the virus. People just heard I had AIDS. They never asked how I contracted it or anything. I would see people whispering if I came into a restaurant as if they were afraid I would have used silverware that they got. Thankfully I had a great group of friends that did their best to protect me from the stigma."  

Derek described how he initially coped with his AIDS diagnosis. "I shut down. I didn’t want to see anyone. I just stopped living. But then two weeks later I had to start treatment and after meeting such a great medical team I slowly came back to life. I learned to laugh again and not pity myself."

Derek decided to become an advocate for people living with HIV, with the goal of eliminating stigma and educating the public about the virus. He started the #endthestigma campaign. Derek used this social media tool as a way of starting a dialogue about HIV in the American south and elsewhere.

"It started in October of last year, I spoke at the local college as part of an AIDS Quilt Ceremony and that compelled me to try and get out and help support others living with HIV. It is building groups of people that support my goal - to end stigma and get everyone standing together and promoting testing and education."

"My biggest challenge is just getting people comfortable having a discussion about HIV" he said. "If we can’t talk about HIV then the perception of it will never change. The general public still has the old fears from the early 90’s. No one in my town has ever stood up and been a voice for HIV."

Says Derek "the #EndtheStigma campagin is me and many others who I've named Angels and Warrors. They have wristbands and shirts that help end the stigma by educating others and encouraging testing. I have Angels and Warriors all over town and even in Florida.The campaign is growing day by day."  

Derek is excited about what the future holds for him. He fights stigma in another way. Derek is a professional DJ in Brunswick, Ga., and has also spun in Orlando, Jacksonville and Savannah and is well  known as DJ-D REK. "I have been working as a DJ for 8 years now and am well known in my town. I also use a very new DJ system called the Emulator, a 46 inch dual view glass touchscreen" Derek believes he can pass the message along about HIV and stigma through music. He has experienced stigma on a personal level when club-goers doing karaoke were afraid to use the microphone after him. Derek wants to change perceptions and eliminate fear.

Derek is so popular as a DJ that at times there is a line up outside the club doors to get in and dance to his music. (Here is a youtube video of DJ D REK in action.)  

Derek's efforts to educate others about HIV and to promote HIV testing continue through community outreach at events and schools. He also wants to go into schools and colleges to tell his life story of surviving 16 years undiagnosed with HIV.

 

According to Derek "Schools need to have speakers that kids can relate to. I know when I spoke at the college here I connected with students on a level they appreciated. I see some of those students around town and they always come talk to me and ask when I’m coming back. I am 30 years old, so the possibility of seeing me on a campus is very easy and when I tell my story I scatter jokes through it. I always tell people that have never seen me speak that you’ll leave laughing with tears in your eyes."

 

In 2014 Derek was nominated as one of the 10 straight sexiest straight men living with HIV.

 

Derek describes himself today as "Doing well, keeping busy and excited to see what tomorrow brings."  He sees himself  as "The new kid on the block". For a new kid on the block, though Derek has made a big impact in the community through his campaign, his music, his regular appearances at schools and other venues to educate the public. At this rate it will be interesting to see what Derek will accomplish in the future.

 

Editor's note: You may be aware that Derek's missed HIV diagnosis was the subject of a protracted court case which Derek did not want  to be the focus of his story as it was long and stressful for him and his family. But briefly, Derek’s family sued, alleging negligence on the part of his medical team because of the missed HIV diagnosis but were unsuccessful. Said a newpaper report in 2007 “A Brunswick man who contracted HIV during a blood transfusion as an infant at Medical College of Georgia Hospital cannot sue his doctors for misdiagnosing his symptoms during a decade of treatment, a split Georgia Supreme Court ruled Monday.  In a 4-3 decision, the state's high court justices decided that Georgia's statute of limitations bars Derek Canas from suing his doctors for medical malpractice even though he did not know about the misdiagnosis until after the clock had run out.”

An appeal was subsequently dismissed at the Supreme Court of Georgia, the decision again citing the statute of limitations. .But the case (Kaminer v. Canas became an important one in establishing the law concerning misdiagnosis suits and when they can be filed and is cited to this day. 

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Watch out for "the new kid on the block" and check out Derek's #endthestigma campaign on Facebook here or on instagram here

 

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