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.

I Need Your Help and Vote

Calling all ‪#‎HCV‬, #HIV and ‪#‎Hemophilia‬ friends, I need your endorsement for this year's WEGO Health Awards ‪#‎HAAwards.‬ I was nominated for the "Health Activist Hero" category. This nomination and honor truly means a lot to me, and defying the odds yet again, 2014 has proven to be the year of forward motion, healing, change and cures. Daily I'm reminded of the dichotomy of health system and patient care, and the veracity of the human spirit. Help me, endorse me and let's win this one for all my #DragonSlayers out there. CLICK HERE TO VOTE!

7 Weeks Post Treatment

In 2006 I treated my Hepatitis C for the first time with PEG-Interferon and Ribavirin. Through a grueling six months I endured side effects no human should suffer, with a less than satisfying outcome. It took me roughly 16-17 weeks to go undetected on a 24 week therapy that should have been 48 weeks, with only a 34% chance of a cure. In just 3 weeks post treatment, I had relapsed. Emotionally I was drained. Physically I was pushed to my limits.

Fast forwarding 7 years later, and the drug Sovaldi was approved by the FDA in December 2013. By January 21st, 2014 I was on treatment with the new drug, and in just 4 weeks my Hepatitis C was gone! Not only was I a rapid responder to the new drug, but I remained undetected for the duration of my 24 weeks to July 7th.

On August 18th, 2014 I was due for 6 week "post treatment" labs to be drawn. Given my previous history in 2006, I was more than just anxious, I was on edge. The results are to your left (click image). 6 weeks post treatment, and I'm still undetected.

I can't begin to tell you the feeling deep inside. Pure joy, and knowing that God is always in control. It's easy sometimes to loose sight of Him, and it just takes a split second to look down. Not only does this serve as a reminder to me that God is still in control of my life, but He still is in the healing business. Psalm 41:3 says, "The LORD sustains them on their sickbed and restores them from their bed of illness."

Clinically, my status cannot be called a cure until 6 months post treatment, which is January 2015. But, I'm off to one heck of a start, and I know "God's Got This."

On a side note, I had reported a few weeks ago that I was experiencing some digestive issues post treatment, especially with diarrhea. After talking with my doctor, she recommended I try a daily probiotic to balance out my stomach and restore the good bacteria in my digestive system. She explained that Hepatitis C treatment often can kill or damage the good bacteria needed to break down foods.

After just two days in taking this supplement, my diarrhea had resolved, and I was back to some sense of normal again. So if any of my fellow dragon slayers are experiencing digestive issues during or after treatment, I highly recommend starting a daily probiotic. I still have random occurrences, but usually it's based on my diet.

The Cold Stare - Chronic Pain From Hemophilia

I am going to open up about something very few know about. Only my parents, wife and a small handful of close friends have seen the real “Joe Burke.”

There is a generation of hemophiliacs alive today who are modern day anomalies of science, and the fact some of us are still alive and well remains nothing short of a miracle. This era of hemophilia born individuals has not only suffered through the era of the AIDS epidemic of the 1980′s and 90′s, but are now facing challenges even more serious with age.

Being a co-infected hemophiliac myself, which means having both HIV and Hepatitis C from contaminated blood products of the early 80′s, I am now facing a giant even more towering than HIV, AIDS or HCV: chronic pain.

Long before today’s standard of prophylactic treatment to prevent joint bleeds in hemophiliacs, patients were given factor VIII infusions on an “as needed” basis. Which means, when a joint bleed occurs, we didn't have preventative measures to stop the episodes. Until my move to Florida in 2009, I was never placed on prophylactic therapy to treat hemophilia due to its cost; often times a bill of $25,000 a month for factor VIII injections and supplies.

Often times the bleeds would stop after a couple doses of factor VIII, but more often than not, many would require more than just 2 dosages to control the bleed. Not only did this style of “as needed” treatment result in severe joint damage, but permanent joint immobility and function.

The pictures to the right show my own body and the damage done to it over the past 30 years. Pictured is my right knee, which is severely and permanently enlarged, my right elbow, right ankle and what a small bruise to a normal person would look like on a hemophiliac.

Not only over time do the joints lose mobility, but managing the pain of something as simple as standing in a shower can be extremely difficult.

Where am I going with this? I was reading a column in National Pain Report recently about a young lady who suffered from muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune related disorders.

Her story of being humiliated by her pharmacist in her hometown echoed many horrors I've experienced personally in requesting proper medications to treat hemophilia related episodes and pain.

Every time I visit my doctor that treats my hemophilia, it gets to the point in the visit where I must bring up the refill of my pain medication. I can’t help but feel somewhat humiliated. Not by the fact I’m asking for pain medication, but that in my asking, I’m being compared to those who abuse the system fraudulently.

I've been okay with my Hemophilia Treatment Center in asking for pain medication and receiving it — although the stigma is still there. But when I ask my pharmacist to fill the prescription, I’m often greeted with a cold stare and told, “We are all out, you’ll have to come back later.”

The cold stare translates into anger in me. And the anger manifests into resentment towards those who abuse the pharmaceutical system to get “a fix.” As a Christian man, I must love everyone, but the drug seekers are making it extremely difficult for those who truly need the medications, thus testing my patience on a daily basis. The Apostle Paul wrote about thorns in the side, and this is a big thorn for me.

Let me be real for a second. There are moments, as a man with severe hemophilia, that something as simple as showering can be excruciating. It’s hard for me to stand in front of a toilet to go #1. I can’t physically reach my back when I shower and often ask my wife to assist. Getting out of bed is a 20-30 minute daily routine for me of just standing at my dresser while holding on so my ankles, knees and hips get used to my weight. And I don’t weigh much at all, just 170 lbs.

I hate the feeling I get as the prescription leaves my hands into the pharmacist’s, and that moment when he reads the script and then the glance upward at me. It’s always degrading to some extent. Automatically, I’m considered “One of Those” types. It’s humiliating that I have to feel this way when all I want is a way to at least relieve some of the pain caused by a hemophilia related injury and permanent joint damage.

When an occurring bleed is happening, not only do we have to rest the joint and pack it with ice, but often times I’m awake all hours of the night without sleep due to sheer pain. Things like muscle creams, joint gels, icy hot etc. don’t even phase a hemophiliac. We bleed internally in the joint.

To all my blood brothers and sisters out there who are the older generation of hemophiliacs with pain and permanent joint damage, we must continue to fight and hold our heads high. We have a medical condition that causes lifetime pain and stress, and we must never feel humiliated or dismayed when asking for help to manage our pain.

Usually it only takes a moment for a pharmacist to see the damage to our bodies and the look on a worried patient’s face. Then they realize that we’re not junkies, we’re not scammers, and we’re not a threat. We are just a hemophiliac who needs help.

They have been conditioned by the DEA to think “druggie.” They are scared. They can lose their job, their career, their assets and their freedom if they make one small mistake. The paperwork, the time and the risk are just not worth it.

The misguided, insensitive and inhumane policies of our government, and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform. It’s for people like hemophiliacs who need a voice and the support of family, friends and community. People living with pain and chronic illness.

You can learn more about Hemophilia by watching this video:

I'm Rebooting

Today, July 28th, is #WorldHepatitisDay, and as we mark today with global awareness, I want to share some pretty awesome news from a visit to my liver doctor today. I had a follow up visit with my Hepatitis C physician Dr. Katherine Smith in Orlando, Florida. It's been over a month since I last seen in her clinic, and this visit was my "post treatment" visit. The virus still remains undetected at the end of therapy, and I will follow up with Dr. Smith on October 20th for my 3 month post treatment visit. Here is a look at my recent lab sheet from the viral analysis.

I told the doctor about a few symptoms I've been having; restlessness, insomnia (mind going a million MPH), and, not to be too informative on this one, but for the sake of the #HCV community I'll list it, diarrhea. She said it was not uncommon for patients who have totally cleared the virus to experience waves of energy, motivation and strive. and the restlessness and energy at night is my body attempting to adjust to a new normal. For so long my body has been used to fatigue, lethargy and a general run down sluggish feeling that I haven't had much energy to do much day to day. Now, I'm hard wired to and ready to plow ahead. As for the random moments of dysentery, same thing applies in my digestive tract as well. My body is rebooting from the inside out. My liver is regenerating, my metabolism is rebuilding itself, my digestive tract is adjusting to a new function of normality, something I'm not used to. Dr. Smith stated that over time, the body will eventually level out, and my symptoms will become less and less enhanced as the weeks go on post treatment. Pretty amazing stuff. I never fathomed my body literally healing and regenerating, but now, it's really happening. I'm a new man, walking in a light and a new victory, leaving my dragon to nothing more than ashes of ruin and a vague memory in the vastness of the future that lies ahead.

As if my life couldn't get any better, this research was published on July 21st, 2014 about a possible upcoming cure in the fight against HIV/AIDS. As if my life couldn't get any more fantastic, the actual word cure and HIV are now being spoken in the same sentence, and the research is under way. Take a moment to watch this amazing and informative video on the new science that could possibly make HIV a thing of the past. To read the official release from the research at Temple University, click here.