Today, My Life Changed Forever

It's pretty astonishing to think about it, and I'm still attempting to process the real scope of things surrounding the past year of my life.

On January 21st, 2014 I began a journey that would ultimately change my life forever, I treated my Hepatitis C with a new breakthrough drug called Sovaldi. Rapidly within 4 weeks of therapy, my virus went undetected, indicating that treatment was working and I was on my way to 20 more weeks of medication, lab work, doctor visits and a plethora of side effects. By the end of treatment on July 7th, 2014, I was still undetected and on my way to hopes of a possible cure.

My infectious disease doctor told me treating with Sovaldi and Ribavirin, I stood an astounding 94% chance of being cured even co-infected with HIV.

Having previously treated with much more toxic and brutal drugs in 2006, this new therapy was a breath of fresh air, but also had it's own mess of side effects. But in the end, the side effects weren't severe, and I powered through treatment like a iron arrow going through the heart of a dragon. Not just any dragon, the king of all dragons, Hepatitis.

The results are in today January 12th, 2015, 6 months post treatment, and officially I can say I am cured of Hepatitis C once and for all. My dragon has been slain, and my life is forever changed. I'm still sitting here processing the events of the past 24 hours of my life after getting this spectacular news. Sovaldi truly works, and the words cure and HepC can now be uttered in the same breath with confidence. Click on the graphic to see the lab work for yourself.

As I pause in this time of reflecting, evaluation and focusing on God more, I am truly humbled by the events of the past year of my life. Never again will I lie sleepless in my bed pondering my own fate. No more weeping in the pillow of my own mortality, and the fate of my beloved wife. To never fathom again the thought of liver transplant, end stage liver disease, cirrhosis or liver cancer is for the lack of better terms, new.

But, I can't forget to give credit where credit is rightfully due. If it wasn't for my persistent faith in Jesus Christ, my surrounding band of brothers and church family, my amazing wife and the endless sacrifices of my parents, none of this would be possible today. Thanks to my caregiver Dr. Katherine Smith for treating me, and lastly to Michael J. Sofia who developed this new miracle drug called Sovaldi.

My blogs will continue, as this is just the beginning of a new era for myself and I Strive 2 Thrive. I am working on a new video documentary as we speak, and I hope to share it with you hopefully by Spring of this year. Forever grateful, eternally humbled and delightfully changed, thanks to everyone who has been a part of this amazing journey with me the past year.

In His Holy and Blessed Name,
Joe Burke (I Strive 2 Thrive)

Dental Care Is a No-Brainer

Oral hygiene is something we should all be practicing daily, especially those living with Hepatitis C and HIV. I can't express how important it is to stay up-to-date on your dental appointments and cleanings. Digestion starts in the mouth, and if your mouth isn't healthy, then your digestive tract will suffer as well.

Those living with Hepatitis C and/or HIV can develop multiple oral hygiene related issues stemming from improper dental care. Issues ranging from mouth ulcers to the gum disease gingivitis, an irritation and inflammation of the gum line are prominant. People living with Hepatitis C are prone to tooth decay, suffer loss of self-esteem due to poor oral aesthetics and have difficulty with diet due to poor oral health, all leading to a compromised quality of life. An effective preventive care program for a patient diagnosed with HCV is critical and should be an important goal for the dental practitioner.

Follow these simple steps to make your teeth and gums healthy. Even earlier stages of tooth decay can be reversed.

• Gently brush your teeth twice daily using a soft bristled tooth brush and a pea-sized amount of fluoride tooth paste. If your gums bleed when you brush, that's not a bad thing! The more you brush, the healthier your gums will become. 
• Spit the tooth paste out, but don't rinse. 
• Gently clean between your teeth with dental floss and/or an interdental brush, your dentist can show you how. 
• Limit your intake of sugar foods and sodas. 
• Chew sugar-fee gum, it stimulates saliva production and neutralizes acids in your mouth.
• Use Fluoride gels. Your dentist may recommend you applying small amounts to your teeth using a toothbrush or dental tray, your dentist can further assist you. 

One tip I have just for you, and this is just from my own personal experience in tooth pastes; my dentist recommended me switch to a specialty toothpaste called Pronamel by Sensodyne. About 6 years ago I visited the dentist here in Orlando, FL - and after understanding my health conditions, he recommended this one product to me. I'm not a big fan of product placement in private blogs, but if helps my community of "Dragon Slayers," then I'm going to blog about it. I've been on ProNamel for about 6 years now, and it's radically increased the health of my gums and teeth. Before, living with Hepatitis C caused many random mouth irritations and often times, mouth ulcers, which I frequently got.

I didn't notice much change overnight, but gradually, a year later, my mouth ulcers vanished completely and my teeth were actually becoming healthier. Something I didn't think was possible living with Hepatitis C. 

My dentist and I advised a cleaning schedule for me every 6 months with dental X-rays. Being that tooth decay is prominent in patients with Hepatitis C and HIV, I want to do everything I can to prevent that. 

One last note, I'm on state funded disability (SSI), which only covers emergency dental procedures. This means in order to get the care I need, I must purchase my own dental plan for the cleaning and X-rays required. I've always had crooked teeth, but never been able to afford to have my teeth straightened properly. My Dentist recommended Invisalign since I was a hemophiliac, but sadly on my budget, I've never been able to have the perfect smile, but that doesn't detour me from taking care of my teeth. I may never have the perfect smile, but at least I'll have healthy teeth regardless! 

If anyone has any assistance on other ways to get Invisalign care discounted, I'd love to know about it. 

Hemophilia Gene Therapy Study Offers Hope

It has now been three years since a group of patients with severe hemophilia B, or factor IX (FIX) deficiency, in London received a single dose of gene therapy as part of a new clinical trial. Early results of the trial were positive as these patients began to generate FIX levels ranging from 1%-6%. Prior to the study, they produced little to none of the crucial clotting factor protein.

This seemingly modest boost in FIX “expression” is important. The increase in FIX essentially transforms a patient symptomatically, from severe to mild, with the end result a significant, even dramatic, reduction in bleeds. Results described in a new article indicate that the initial breakthrough results have been sustained during the three years since the study began in 2011.

The report, “Long-Term Safety and Efficacy of Factor IX Gene Therapy in Hemophilia B,” was published in the November 20, 2014, issue of The New England Journal of Medicine. The lead author of the update was Andrew Davidoff, MD, St. Jude Children’s Research Hospital in Memphis, TN. Davidoff has collaborated for more than a decade with a strong team of researchers, including coauthor Amit Nathwani, MD, PhD, at the University College London. “I believe that, scientifically, this is ready for prime time,” said Davidoff.

The gene therapy trial employed an adeno-associated virus serotype 8 (AAV8), a small virus that does not cause disease and produces mild immune responses, as a vector (delivery vehicles) to introduce a functioning FIX gene into the liver cells of subjects with severe hemophilia B. The goal of the trial was to trigger viable, long-term FIX protein production through a single administration of the therapy.

Overall, 10 subjects with severe hemophilia B participated in the study, six of whom received high doses of AAV8 and reached average FIX levels of 5.1%. According to investigators, this “resulted in a reduction of more than 90% in both bleeding episodes and the use of prophylactic factor IX concentrate.” Also, no toxic effects were reported.

“I think it’s going to have a big impact. The study showed both safety and efficacy, and the side effects were minimal,” said Timothy Nichols, MD, who heads the Francis Owen Blood Research Laboratory at the University of North Carolina at Chapel Hill. He was not involved in the study. “This is a single shot of medicine given to patients who are treating themselves two or three times a week,” he told Reuters Health over the phone. “Suddenly, they don't have to take the medicine anymore.”

If this breakthrough therapy exists in Factor IX patients with Hemophilia B, it shines light on the possible future for all of those living with the clotting disorder. Just imagine a world free of Hemophilia, HIV and Hepatitis C; according to modern science, we no longer have to imagine but wait.

Source: Reuters, November 19, 2014

A New Dawn

The labs are in for my 3 month post treatment, and remarkably, I'm still undetected! I can't begin to tell you how enthralled I am at the power of these new wave of Hepatitis C drugs; They work!

The proof of seeing cure in black and white is surreal, almost like I'm living a dream in a fantasy world that I never want to wake up from. But of course, it's not fantasy, it's reality and I'm living the life I only dreamed of as a teenager.

Never to worry about liver transplants, end-stage liver disease and all the horrific complications that come from chronic Hepatitis C. It's as if God Himself waved His hand over my life and gave me a second chance to thrive.

My liver is also showing signs of healing, as various levels like platelets, alkaline phosphatase are resolving. My alkaline phosphatase at 6 weeks post treatment was 177, now down to 153 with a normal range of 119. ALT, AST, bilirubin, albumin, HGB, HCT are all now normal range and have been since the 4th week of treatment.

With the healing of my liver and the second chance on life, it's now time to fix the damage of living with Hemophilia for over 30 years. On Thursday October 16th, I went in for X-rays of my bad right knee. What the doctors saw on the scans (shown to the right) left them speechless. They realistically didn't understand how I was able to even walk or move the knee as good as I did.

The cushion space as shown in the normal leg are unremarkable, while my target joint right knee is all deformed with barnacle like bone structures and literally bone on bone grinding. No wonder I suffer from chronic pain.

Within the next 4 months, I will be seeking a full knee replacement and rebuilding my body since my liver is now healed. My goal, by the time I'm 40 is to have all my injured joints fixed or replaced and push my body to limits never imagined before. I want to compete as an athlete in cycling and running competitions. They say 40 is the new 20, so we'll see! My orthopedic appointment is set for October 27th, 1PM, and I'll be sure to blog the post visit information here on this web site.

On October 10th, oddly enough my wedding anniversary, the FDA approved yet another Gilead Sciences behemoth that is boasting up to 94-99% cure rates for Genotype 1 Hepatitis C patients.

The future is here. Gilead have now combined Sovaldi (sofosbuvir) and the newer formulated drug Ledipasvir.

Harvoni is a daily pill that includes Gilead’s NS5A inhibitor ledipasvir plus the company’s nucleotide analog polymerase inhibitor sofosbuvir. The latter drug was approved in December 2013 under the brand name Sovaldi, which quickly became a blockbuster. As some of you may or may not know, Sovaldi is the drug that cured yours truly.

The future is here, the Dragon Slayer nation rises! Makes me wonder how far away we are from an HIV cure? Months? Years? With my cured healing liver, a possible repaired physical body, all we need now is a cure for HIV, and AIDS will officially be no more.

Finally, here is a song I wrote in 2010 on my second album called "A New Dawn." Little did I know 4 years later, that title would have a lot more significance to me. Hope you enjoy the song, and if you like my music, head over to my iTunes, Amazon or Spotify pages for a listen.

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.