Pfizer’s “Science Will Win” Campaign

Despite spending most of his childhood in the hospital because of hemophilia, he is living proof that the right treatment can improve your quality of life. As a child, Joe spent most of his time inside, facing a series of blood transfusions that limited his mobility and prevented him from participating in activities like many kids do.Now, with a once-a-week treatment, he’s able to do the things he once only dreamed of, like hiking and working out with his wife. Visit my page on Pfizer’s official web site, and help me share this incredible opportunity to share my story to the world.

Featured on Hashtag Our Stories

Hey friends! It's been a while. To be honest, not much has changed in terms of my healthcare and physical status. I'm still taking the same medications, and pursing an active and healthy gym and fitness lifestyle. I'm so blessed to be in the season I am in, and my labs look great! Home life is the best it's ever been, and the wife and I are still traveling and going to the theme parks regularly here in Orlando, FL. 

One thing that is new is I'm currently seeking treatment on my lower back by way of chiropractic care. My first appointment is on Thursday (two days from the date of this post), so I'm a little anxious about how treatment will go for a severe hemophiliac. To be honest, my back could use some major work. Having one leg shorter than the other from a lifetime of target joint bleeds in my right knee, my entire right leg is a half inch shorter than my left. This is because there is no spacing in the joint to cushion impact like a healthy joint's synovium has. My right knee is literally bone to bone. So I will update you guys on the progress there after my appointment. Fingers crossed! 

As the title suggests, I was recently featured on the mobile journalism platform, Hashtag Our Stories. It's founded by Yusuf Omar, and basically allows users to share their stories of triumph, hardship and really peels back the veil from mainstream media bringing new light to how stories of individuals are told and shared. Their stories are shared on social media platforms like SnapChat, Instagram, Facebook, YouTube and Twitter as opposed to mainstream network media. 

In honor of World Hemophilia Day, which was on April 17th, 2022 this year, I was approached by Hashtag Our Stories to record and share my full unbridled story. Below is the video the 3 and a half minute video their editors put together. I've gotten a range of emotional responses, and a wealth of love and support for being so transparent. But, it's not my story, but God's story. God is using my hardships to help comfort the lives of those hurting, with questions and seeking counsel about their own diagnosis. I pray this video will steer your in the right path, and encourage all who watch it let me know your thoughts. My DM's are always open. 

A Life With Chronic Pain (A Hemophilia Perspective)

The majority of my life, I've dealt with multiple aspects of chronic pain stemming from living with hemophilia. Until recently, therapies and research have shed new light on patients who live and cope daily with these ailments. Also, special guest and hemophiliac troubadour Ryan Seeley joins the panel to share from his own perspective. Join the discussion, and please share to those who could benefit.

Going Green, a Journey of Medical Cannabis

On November 8th, 2016, Florida voters went to the polls and cast their ballots to pass medical marijuana as an alternative chronic pain treatment option. Amendment 2 under new Florida law states, a person may possess and use marijuana if he or she is doing so to treat a "debilitating medical condition," which includes but not limited to: PTSD, cancer, epilepsy, glaucoma, HIV, AIDS, ALS, Crohn's or Parkinson's disease and multiple sclerosis. Amendment 2 passed with an overwhelming 71% vote, and for the first time granting the state of Florida and board certified doctors to prescribe low-THC cannabis and other medicinal forms of the cannabinoid. Even though the 5 page document which embodies amendment 2 is relatively small, a lot of ground work is still needed by lawmakers and legislation to prepare the state for medical marijuana distribution. Patients with a valid state issued ID, medical documentation of "debilitating medical condition," and no previous drug/criminal history are eligible. This is where I come in.

I waited a few months after January 3rd, 2017, when the law took effect in Florida, to search for a certified doctor who prescribed medical marijuana that I felt comfortable with. The main reason for my delay was to follow up with my own research into the process, and understand how this new system works for patients from the outside. I am documenting my complete journey, in hopes of offering educational value and assistance to patients who are seeking the same level of care as I. After hours of my own investigating, I was finally able to settle on my doctor here in the Orlando, FL metro area. He is Dr. Jason Schultz, an Orlando based emergency medicine physician, and his practice under the Florida state-wide organization is called "Green Health." Green Health has multiple offices currently in Tampa, St. Petersburg, Orlando, Jacksonville, Miami, West Palm Beach and Fort Lauderdale.

So what exactly is the process for the state of Florida in obtaining a "medical marijuana" card? Getting an appointment is relatively easy, as they accept any appointments as new patients. The key, however, is that you must provide a primary or specialty doctor's summary stating your diagnosis on the outlined approved medical conditions for the state, which are outlined above. Let me be 100% clear, your medical insurance WILL NOT cover any of the treatment guidelines offered by the medical marijuana doctor's office. All visits to this office are $125 per visit, but we'll cover up front expenses later.

So, what does a medical marijuana doctor's office look like? If your first initial response was like mine, a 'hole-in-the-wall' building that just serves to hand out marijuana cards, you're poorly mistaken. Upon entering the building, which is home to many other medical companies like Vista Labs, and Simon Med radiology, I noticed it was very clean, and well maintained. Green Health is located on the second floor here in the Longwood, FL office. Upon entering the door, you're greeted with a Green Health insignia, and a rahter pristine establishment. I seriously had no gripes about the facility itself, and was very relieved to see the Green Health clinic office was actually more modern and upscale than I originally anticipated. One never knows what ordeals you're getting yourself into in going to these types of unknown and new places, especially one that prescribes cannabis.

The waiting room was very pleasant with low-lit ambient lighting, which was a perfect environment for those battling light sensitivity ailments. Again, very clean and modern. All patients fill out a 5-6 page questionnaire which are generalized insight into your medical conditions and the reason of your visit. The staff and nurses were all warm and welcoming, and greeted every patient with the same level of respect and sincerity. They also request your state issued ID which is used to determine your criminal status (if any), and validate your residency and home address. I had no hesitation in handing them my Florida state driver's license.

The exam rooms also followed suit with a modern feel, the floors were spotless. With any doctor appointment, I always can determine the caliber of establishment based on the overall cleanliness of the facility. Again, I'm thoroughly impressed with Green Health and the building facility. The nurse took my vitals, and politely asked me to wait as the doctor would be in shortly. The wait was less than 5 minutes, and Dr. James Schultz greeted me with a friendly smile and hand shake. His bedside manner was just remarkable, and super easy to talk to. He encourages patients to ask as many questions as you want, and that the time spent with him is truly valued. We spent about 20 minutes discussing my potential treatment plan and combination therapy for chronic pain management. I asked so many questions from cost, protocol, medical delivery etc.

So, let's get down to the real meat and potatoes of how Florida handles medical marijuana. Each doctor's visit with Green Health is $125 out of pocket, no insurance accepted. A minimum of two visits are required. Upon the second visit after 90 days, the physician can then legally recommend medical marijuana to patients. The 90 day waiting period is mandatory from your first visit. Every 45 days, a follow phone call is required to discuss dosing adjustments and any alterations to the treatment plan needed. This phone "check-in" is $20, and required every 45 days for medical delivery and marijuana card membership. After 90 days, the physician will then order the desired medications from one of the dispensaries located nearest to you within the state.

My local dispensary happens to be Knox Farms in Winter Garden, FL. So how much is it to purchase non-insurance based medical marijuana? A little more pricey than you think. With a limited number of dispensaries starting out, only seven currently in Florida, the prices are higher starting out. My doctor informed me that he would start me on a 24-hour chronic pain low-THC treatment plan. The regimen would be comprised 1 cannabis pill daily that lasts 12 hours for daytime activity, mouth drops for nighttime and a vapor for breakthrough pain related episodes. With these three medications from the dispensary, my total will range from $100-150 every 45 days out of pocket expenses for the first month. There is also a $20 dispensary deliver fee, in which my prescriptions will be delivered discretely to my house from Knox Farms. Dr. Schultz did advise me that I won't have to purchase some of the medications upon my follow up dispense, as some items are "as needed." Like the vapor, which is a 1-2 hour short acting treatment for breakthrough episodes. The main focus is the pill forms daily.

So, here we are. First visit is over, and I now await my post 90 day doctor visit to actually be able to purchase medical marijuana for my chronic pain. Let's recap all the overhead expenses you need to know about if you plan to pursue this treatment option for your medical conditions.

1. Doctor Visit #1 (getting established) - $125
2. Doctor Visit #2 (post 90 day approval) - $125
3. Every 45 day Check-in (to maintain card as patient) - $20
4. Medication Dispense (first shipment) - $100-150
5. Medication Dispense (post first shipment) - $45-55

I do hope this helps to shed some light on the whole process here in Florida. It does have some intricacies to it, and the second 90 day waiting period is a bit of a pain, no pun intended. To keep your medications arriving monthly will generally cost about $70-100 according to the information I received at today's office visit. These prices, though on the higher end now, will gradually decline as more and more patients register, and more dispensaries arrive in the Sunshine State. 

I can't imagine a world living in little pain, and not having to rely on harmful opiods to manage my conditions. I truly excited to give this new option an try, and I plan to document everything here in my blog. 

Chronic Pain Management in Hemophiliacs, An Unheard Story

For the past couple of years, I've been weighing my options in terms of seeking medical treatment at my current Hemophilia Treatment Center (HTC). Deep down, I've felt more like I've been a statistic, rather than a genuinely cared for patient who lives with hemophilia. The treatment center has gradually slipped into an unforeseeable decline of patient care. Let me explain.

A very serious issue among the 40 something patient populous is the management of chronic pain, stemming directly from permanent joint damage derived from hemophilia related joint and muscle bleeding. Multiple bleeds over time, in my case almost 4 decades, have left me immobile in many of primary joints including left shoulder, right knee, right elbow and both ankles. The pain from this type of damage is at times, very intense and severe. Many times, leaving patients spending long nights lying awake in their recliners hoping and praying for some sign of relief to the inflamed joint so they can simply sleep.

Today, I was pretty much ostracized for my condition by my chronic pain management doctor, who up until today has been warmly welcoming to my condition and case. What was to be a routine follow-up appointment, ended in me questioning whether or not I was a lowlife addict who was only there to receive pain medication. His exact words, and I quote, "There is no need for you to be on pain medication, you appear today to be doing well." After explaining to the doctor that I've been having trouble sleeping as a direct result of pain from my joints and right elbow, he was forcibly quick to chime in, "Yeah, but you don't need a medication to sleep, there is nothing wrong with you." Upon attempting a second time to reinforce my disease of living with hemophilia, he looked and said, "I'm weaning you off all medications, and will put PRN on your appointment slip," which means no follow up. I left the clinic feeling worthless, defeated and that I was only there like an addict seeking a fix.

Let me be clear, I've seen the horrific effects of pain medication addiction even in my own family, I know the risks of being an addict versus taking a medication on an "as needed" basis for relief. I am in no way addicted to pain medication, and solely do no rely on them for daily function. Hemophilia and chronic joint pain go hand-in-hand, and no one in the industry today seems to want to blow the lid off this issue. The chronic pain management doctor gave multiple attempts to try to alleviate my pain by prescribing Gabapentin, and Lyrica, both neuro blockers that treat muscle and nerve pain. But, my pain isn't directly muscle or nerve, rather direct bone to bone grinding and internal joint hemorrhaging. Both drugs failed miserably at treating my pain, yet I gave them both valiant efforts.

My question to the everyone in the hemophilia community, "Why isn't this issue addressed more in older patients?" Patients today, age 25 or under, don't have the joint deformities we older patients have because they've all been placed on prophylactic treatment regimens to prevent bleeding episodes. Thankfully, now, I am on a preventative treatment regimen as well, but chronic pain is the number one issue that I face each day. I despise going to the pharmacist, handing him the script and the look he/she gives me when they read the drug's name.

And my complaint isn't with just the pain doctor, but the entire HTC as a whole. From their poorly communicated social worker, who has now since been replaced, to the physical therapist that simply walks in, looks at my joints, and states, "that's a really messed up joint right there, what are you doing for it?" Wait... Shouldn't you the physical therapist be offering me insightful knowledge on treatment options and, GASP... possible physical therapy sessions? Rehabilitating a joint, building muscle around the joints will cause a lot less bleeding episodes, but no treatment options are given or offered, just a consult, and out the door and on to the next.

If you're living with hemophilia, and you're currently happy with your doctors and treatment plans, than I am more than thrilled that you've found your niche. But, if you're a patient questioning your own value and worth, and your doctors demeaning tone leaves you feeling more-or-less like a "frequent flyer," than it's definitely time to change. So, as of today, I'm doing just that! I've been with this HTC since March 2009, and in these past 7 years seen a gradual decline of patient care and value. If you're like me, and trapped in the psychological mind game of treatment facilities, than perhaps you should take a stand and change things up. Effective today, I will no longer seek medical treatment for hemophilia from this facility. I am moving my care to to a different city, a new HTC and a doctor whose perspective on hemophilia is more compassionate than the latterly explained.

Hemophilia and chronic pain management will forever be tied together. I stand silent no more, and plan to expose the dark side of the health care industry. Don't stay at an HTC just because you get what you need, that's not progress. Stay because you feel valued, respected and cared for. 

Relief - A Joint Health Supplement 30 Day Review from It Works!

Over the course of the next 30 days, I will be blogging and posting about my experiences trying the new relief supplement from the company It Works! For years, I've tried countless supplements and options to treat me joint pain, and so far, nothing has worked.

I am doing this in hopes of possibly bringing light of a new product to the bleeding disorders community, and hemophiliacs alike. There's no guarantee this will do anything, but I'm certainly willing to try. Please follow me on these social media platforms as I journal, blog and post picture updates about my experiences over the next 30 days. Here's one thing you can rest assured on, I will be brutally honest with my readers and viewers. If the supplement does not work for me, makes ailments better or worse, I will be 100% transparent.

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One Step At A Time

This past week has been rather monumental for me, once again proving to myself that I am not defined by the limitations given to me from those based in the medical community. With a severely damaged right knee, and ankles that crunch and crackle with each step, I managed to walk a total of 34 miles and close to 81,000 steps last week alone. Of course I was on vacation, and was required to do a considerable amount of walking, but nonetheless, I proved not only to myself that I can do it, but to others as well. Sure I was sore, aching and feeling the result of daily activities by night, but I am conditioning myself to walk more and more. It all started in the theme parks, and walking those successfully, and now I'm able to walk much longer distances. Last week alone, I managed to rack up 27,464 steps in a single day. That's close to 12 miles worth in a single day of just walking. You can do it, you can beat the odds, you can overcome and remember, you are not defined by your disease(s). Any goal worth striving for requires effort, so start small, and build yourself up more and more each day. Before long, you'll be astonishing not only yourself, but your doctors and those that wag the finger in your face and say you cannot. If I would have listened to my doctors in the 80's, according them I would be confined to a wheelchair by age 30. The world tells us no, but the human will is a mighty force to be reckoned with. God Bless! -Joe 

An In Depth Discussion with Joe Burke, Surviving Hemophilia, HIV and Hepatitis C

An in depth discussion about living with Hemophilia, HIV and Hepatitis C, Joe Burke opens up about living daily life with chronic illnesses, and where he gets inspiration from.

One Year Ago Today, A Reflection of Life

I officially obtained my one year "post liver treatment" lab results early this morning, marking my official one year anniversary of ending treatment on Sovaldi and Ribavirin. I ended treatment on July 7th, 2014. After one year of completing the toxic regimen, the virus remains "Undetected," which means the my Hepatitis C is 100% medically, officially and without question gone for good.

It's a little overwhelming to know that I don't have to face one of my dreaded fears of liver transplant, ESLD (end stage liver disease) or cirrhosis. I always projected my life going downhill in my late 30's based on how many years I actually had Hepatitis C and the estimated pattern of how the virus was attacking my liver, which was pretty regular. But now, God has gave me a new sense of normal, I'm cured. I don't take this cure for granted, and I walk each day with a new fresh perspective, and certainly with a sense of humility for the extended years added.

I remember a deep conversation I had with my wife before we exchanged vows, and in that late night discussion, I told Alexandra some things she should be prepared for concerning my health, age and overall well being. I recall that night being tearful, sorrowful and painful. But true love conquers all barriers that life hurls at us. Thankfully, she stuck with me, and now, the cure has happened. All those dark disturbing things we talked about won't happen the way I envisioned my life to progress. Even though it was my job to inform Alexandra the consequences, she loved me regardless, despite the difficulties and trying times, that's the power of "real love."

Quotes from Joseph Burke

When I first met my wife in 2008, my mind was so fixated on the "what if's" and the "could be's" instead of what God can truly do with a little patience. That was the life lesson I was taught by the Big Man upstairs, patience and forbearance. I treated once in 2006 for 24 weeks on Ribavirin and Interferon injections, to ultimately relapse 3 weeks after treatment ended. I had very little expectation going into this new treatment on Sovaldi, but despite my fears, it worked! No more fixations and daydreaming about my life spiraling out of control as my liver fails. It's pretty overwhelming, even as I write this, as the tears of rejoicing just flow.

I recall my wife telling me often, that she was praying for my cure. She frequently reminded me in church and home that her one main prayer was for the cure to happen. Above all else, she wanted her husband around, and the moment that prayer was answered, and God showed up, was mind blowing.

I'm fortunate, lucky and persevered through the trying times that us hemophiliacs faced in the 1980's and 1990's. It wasn't easy being a bleeder with HIV and Hepatitis C in those days. The stereotypes imprinted from the negative press are still very relevant today, but it's my job through this blog and "I Strive 2 Thrive" to educate the masses, and offer hope to those who suffer with my illnesses. It's enough to have hemophilia alone, but combine HIV, chronic pain and my now my cure of Hepatitis C, I've become empowered to educate those who still have those uneducated beliefs about any of the illnesses I endure daily.

This win may be of science, and the pharmaceutical company Gilead for manufacturing Sovaldi, but the real win here is one for God. He allowed me endure just a little longer, become married, and through that I learned patience and a deeper understanding of who I am, and whose I am. I count my blessings daily, and don't take each breath for granted. This cure has empowered me to help and enrich others lives, and do it with love that only comes from God. Today marks two anniversaries in my life, my parent's 37th wedding anniversary and the one year anniversary of my cure. Funny how God does that right, almost like a wink and pat on the back as I'm reminded how truly awesome He is.

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 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: