National Hemophilia Foundation's 68th Annual Meeting (NHF 2016)

The entrance the annual NHF conference at Gaylord Palms.

The NHF annual conference is designed to connect both patient and caregivers to the industry leaders among the pharmaceutical companies and the physicians who treat hemophilia. This year's annual conference was held at the 'Gaylord Palms Hotel & Resort' in Orlando, Florida, and kicked off a three day event on Thursday July 21st-23rd, 2016. For the first time, the NHF conference lead into the World Federation of Hemophilia (WFH 2016) conference, which is a global initiative to see seek "Treatment for All." WFH unites global hemophilia chapters, bringing together scientists, physicians, patients and caregivers from across the globe with a 4 day conference.

Joseph & Alexandra Burke with Jeanne White-Ginder, Ryan White's mother.

This year, was very emotional and there was a sense of spiritual connectivity among fellow hemophiliac survivors. A fresh sense of rebirth is awakening among the bleeding disorder community, as new treatments not only for bleeding disorders are on the horizon, but breakthroughs in HIV and Hepatitis C therapies have given the community a 'Burst of Life.' More and more hemophiliacs who were affected by the pharmaceutical tragedies of the 1980's are being cured of HCV, and thus the mortality rates among the bleeding disorder community among that generation of bleeders have significantly been reduced. I had the honor to hear Ryan White's beloved mother, Jeanne White-Ginder speak at the conference on the realities behind the scenes during Ryan's media bombardment of the late 80's and early 90's. She recalled fond memories of Grammy winning musician Elton John staying by Jeanne's side during Ryan's final hours, to a heartfelt phone call from the 'King of Pop,' Michael Jackson. What a strong and humble woman Jeanne is, a true beacon of hope and light among the bleeding disorder community. For me personally, this journey has in many ways come full circle, as I now realize my role and plan of action in my own steps toward hemophilia, HIV and HCV advocacy.

Joseph & Alexandra Burke with Clifford & Louise Ray.

I also had the distinct honor of meeting another ambassador of the hemophilia community, Louise Ray. Mother of Ricky, Bobby and Randy Ray, many can remember the horrific news media coverage of their home being burned in Arcadia, FL because of the AIDS scare in the 1980's. They've endured so much, and today only Randy Ray survives, carrying the torch for his two brothers. The bond between the Rays and Whites is strong, and their story echoes the senseless tragedies and dark ages of the pharmaceutical industry among the bleeding disorder communities. It was very emotional for me as a patient and now advocate to hear their stories of enduring, which ignites my own passion and fire to educate the world that, "We've Come So Far, But Not Far Enough."

Alexandra looks at artwork in the Blood Works Gallery
from her husband Joseph Burke.

A special blessing was having several of my paintings featured for the second year in a row at the gallery of "Blood Works."The gallery is composed from submissions only from the bleeding disorders community, and highlights the artistic creativity that thrives among those living with hemophilia or Von-Willebrands disease. I even had three songs on the "Blood Vibrations: 5 (Blood Work Mixtape)."I want to give a huge shout out to Justin Levesque from Maine, who organized and coordinated the Blood Work gallery exhibit during NHF's 68th Annual meeting. Justin is from FOLX, which "aims to support positive physical & mental health outcomes for people in the bleeding disorders community from diverse backgrounds."Again, great job Justin!

Joseph & Alexandra's Artwork Piece during "Couples Art Therapy."

One of the sessions on the final day of NHF was "Couples Art Therapy." The session allowed couples to dive inside the dark portions of living with hemophilia, yet focusing on the hope of a brighter future. The class was open for interpretation, and allowed couples to create works of art that depicted their dreams and ambitions together. My wife Alexandra and I had so much fun putting together this piece that overlapped our hands, while putting our faith in God at the center of our lives. We got several really heartfelt comments from participants and officiants of the session on our idea. It is our hope for me to be cured of HIV, and remain thriving for God and each other. A testament to enduring the hardships of life, and achieving favor in the eyes of your spouse. This session was very unique, and in-depth, and allowed couples to artistically reveal what their hearts and minds are truly saying about living with a bleeding disorder, or caring for someone with the disease.

For more pictures from NHF 2016, please see the official album below from my I Strive 2 Thrive Facebook Page.

The Uncomfortable Subject; Bullying

Writing this article is very difficult. I'm revisiting old wounds that I've long moved past from, but I'm doing so to raise awareness to stop bullying. My local television station here in Orlando WESH2 is dedicating an entire week to raise awareness of bullying, cyber-bullying and beyond; which is hosted by anchor Jim Payne. In light of this week, I feel it is necessary to open up about my scarred past and encounters with multiple bullies during my elementary and high school years back in Kentucky.

Growing up sickly immediately raises the bar for any child going to school. Being born with Hemophilia Type-A severe, which means less than 1% of clotting factor in my body, I had no idea what was in store for me in the years ahead. By age three I contracted both HIV and Hepatitis C from contaminated Hemophilia blood products from Cutter Pharmaceuticals in the mid 1980's. Much like the stories of national news headlines of Ryan White and Ricky Ray, I too faced mountains of discrimination and bullying.

Being a hemophiliac, I bruise easily, so being like any kid, playing in the dirt, on my bicycle in my back yard at home, I acquired tiny bruises all over my arms and legs. There were times my parent's own care at home was questioned by the school board, but thankfully they quickly realized I was a hemophiliac and understood. But some of my fellow peers in school didn't understand the term bleeder or hemophiliac, and in that misunderstanding, lashed out at me because of my differences.

By age 8, I developed what doctors called a target joint as a hemophiliac, my right knee was injured around 3rd grade and I formed a noticeable limp. I was mocked, pushed out the way, butted out line in the cafeteria, and nicknamed "bruise." I will not mention names, nor will I ever, but about five of my male classmates developed a sport of mocking me in front of my entire class when the teacher would leave the classroom for any manner of time. Trash was thrown at me, and yet I kept going.

Bruise, cripple, peg-leg, hop-a-long were just a few of the names. But then, later in high school, the bullying increased, and verbal mockery became physical mockery. My books were knocked out of my hands, thrown down the hallways, purposely tripped and I was slammed in lockers. At one point, my entire right arm from shoulder to elbow was one massive bruise from the physical bullying. The only solace I found was in a handful of friends who were all girls. I found out that girls didn't mock or bully, so I hung around them as much as I could to escape any interactions with those that bully me.

Many nights, I would come home from school, close the door to my bedroom and cry silently in the pillow so my parents wouldn't hear my pain. I cried out to God, "Why do I have to be so different? Why did you make me a cripple to be made fun of?" The pain of those moments was incomprehensible. The dichotomy of my life from a loving home life, to being bullied waged a mental war within me that took me years to decipher.

There were moments in which I questioned the value of my own life. Why do I have to suffer so much pain mentally and physically? Why do people not understand me? Why does my body hurt and bruise every single day of my life? Why do my joints swell four times their normal size? Why do I bruise at the simple bump or flick of a finger? There were many times, I just wanted it all to end, my life included. For some reason, death didn't scare me, mainly because I encountered so much hate and anger in my own life. The only thing that kept me sane during all of this was the love of my parents.

The veracity of the situation molded me into the man I am today. I know what it's like being "that kid" in school. I know what it's like soaking your pillow with tears from not understanding life. As a man today, I see that God had a perfect plan for my life.

Looking back now, as an adult, I forgive each and every one of those individuals that did wrong to me. I don't hold grudges against any of them, and I pray they find the goodness of God and feel the joy that I have in my soul if they haven't already.

Unfortunately for me, I had to be thrown into an adult world at a very early age, and the responsibilities of taking my medicine on time, keeping up with my home IV's and being extremely cautious of my surroundings at all times molded me to become the very observant person I am today. Name bashing get's one nowhere in life, it only lowers us to the level of expectations of the source. What's the old saying, “Sticks and stones may break my bones, but names can never hurt me?” So true.

My message to those bullied, your life is so precious. God crafted you perfectly for a purpose, and even though right now you may not know that purpose, you're still one of His. We all have to live with the choices we make, good and bad, but you also have the power to change lives and do good. Sure I cried in pillows and questioned my creator for the hand He dealt me. Don't be bullied into silence, and left to deal with this alone, and never allow yourself to be the victim. Accept no one's definition of your life, thus do not be defined by what others say you are. I was called cripple so many times, but I realized I am not my disease.

It's estimated that over 160,000 children stay home from school daily, simply to avoid the bullying. Don't let small people reduce your great worth. Reach out, talk to a teacher, talk to a counselor or church pastor. You will get through this season of life, and shine brighter than any star the heavens have ever seen. You can do it if I can do it. I'm not defined by words, rather by my Savior Jesus Christ who molded me perfectly. Ephesians 2:10 says, "For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." I am not my disease, I am a child of the one true King. I am Joe Burke.