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. 

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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March is Bleeding Disorders Awareness Month

For over 30 years, the Hemophilia community has recognized March unofficially as "Bleeding Disorders Awareness Month." The name originally came from a 1986 Proclamation by President Ronald Regan, the impact and message as always been about bleeding disorders in general, and embracing the history from which the hemophilia community originates.

We've come a long way since the 70's when hemophilia treatments first began being used mainstream. The community has endured and suffered it's fair share of heartache and loss. Treatments today are improved vastly, and breakthrough treatments are in development as we speak to help the hemophilia community with our bleeding disorders.

Over the next 31 days, let's pause to reflect, taking a glimpse back, while straining forward and embracing new horizons in bleeding disorders. Reconnect with family members, share old photos and post on social to support someone you love with a bleeding disorder.

The follow list of things to do comes from the Hemophilia Federation of America.

• Change your Facebook and Twitter profile pictures to show your support. 
• Wear your bleeding disorder shirts or wristbands and share your photos on our wall to show support.
• Invite family and friends over to watch Bad Blood: A Cautionary Tale in an effort to educate about our community's history. 
• Explore the interactive historical timeline. 
• Print out educational cards for your kids to help raise awareness about hemophilia and von Willebrand Disease among their classmates. 
• Give a presentation to your child's school or to your colleagues about bleeding disorders. 
• Support your local Hemophilia Chapter, and help with fundraisers to promote bleeding disorder awareness. 

The Road to Digestive Health & Prevention Among HIV, HCV & Hemophiliacs

Let me open this post with some very important information regarding long diagnosis' with HIV. I come from a large family of hemophiliacs, 6 male cousins of mine in total all were born with the genetic blood disorder. 2 have passed over the years from complications relating to HIV/AIDS. Recently, I was informed one of my male cousins has been battling colon cancer for some time, and is now facing lymphoma as well. The culprit? HIV.

We now have ways to stop the virus from replicating it's RNA and progressing to AIDS. Thanks to recent advances in the past 10 years of cART (combination antiretroviral therapy), we can now prolong the lives of HIV patieivets many, many decades if compliance in drug therapies are sustained. But now, the biggest statistic resulting from prolonged HIV infection are various forms of anal, colon, lung, cervical, prostate, breast cancer (among others) are now the leading cause if morbidity and mortality among patients.

Over the next few months, I'm going to tear down some walls, and open the veil of transparency in my life. The recommendation for a colonoscopy is at age 40. But I'm willing to change the rule book for Hemophiliacs, HIV and Hepatitis C patients, and see if we can initiate new standards of preventive care by 35. The quicker we establish a baseline of our digestive health, the better off we are.

With the recent news of my family member's diagnosis, I'm carrying the torch into uncharted ground and posting everything that happens here on my blog. Triumph. Discouragement. Headache. Insurance. All will be brought to the limelight here on my site as my journey to obtain a colonoscopy by age 35 gets under way. The next few months are going to be a bumpy ride I'm sure, but be praying for me during this time that we get answers, good results and change the standards among Hemophiliacs, HIV, Hepatitis C and co-infected patients. It all starts tomorrow morning, 9:45AM, with a visit to my primary care doctor to obtain a referral needed to see a gastroenterology specialist and hopefully get a screening scheduled.

Factoring Up Will Never Be The Same

Today September 11th, 2015 is a date in which we not only pause to reflect on the tragic events 14 years ago in New York City and the Nation's Capitol, but strangely enough, a day of rejoicing within the bleeding disorders community. The FDA announced today that Roche's new drug ACE910 has been escalated to fast track status promising amazing results and a game changer among hemophiliacs suffering with Type A severe clotting disorders.

The new drug will be a breakthrough "subcutaneous injection" steering away from the traditional vein or port access among hemophiliacs today. The under the skin injection will be administered once a week among hemophiliac patients who have no inhibitors to factor VIII proteins. The first trials are expected to commence in early 2016 in young pediatric patients with Type A severe hemophilia. Control studies will be tested in both inhibitor resistant and non-inhibitor patients.

"Sandra Hornung, the chief medical officer at Roche, said that the FDA granted permission because they recognize that it meets a segment of the population that it hasn’t met before." PPPFocus.com

As a hemophiliac myself, having my veins accessed for the past 35 years, this new anti-hemophiliac factor VIII will be one to keep our eyes on. Though the nation may mourn the events of 14 years, members of the bleeding disorder community rejoice today in light of Roche's announcement of the new hemophilia drug.

Full Article: http://www.pppfocus.com/hemophilia-drug-given-fda-fast-track-designation-303295/

Cholesterol, HIV & Hemophilia

So recently I had a lipid profile ran during my latest rounds of lab draws, and in the results found some of my panels to be a tad elevated. My cholesterol levels were at 268, while my Direct LDL was 194. I've personally never had any issues with lipids until now. So as we dive into this situation more, I want to unravel the chaos that can come from having multiple chronic illnesses that effect other illnesses and their treatments. I need to stress before we get started, my elevated lipid levels are a direct side effect of taking HIV medication for over 20 years, not so much diet. I allow myself a splurge day once a week, but beyond that, I actually don't eat too unhealthy.

My family doctor placed me on a fish oil supplement and 10mg Atorvastatin or "Lipitor" for short. But there's a huge problem with statins in the realm of HIV medication. Turns out a protease inhibitor that I've been taking since 2005 called Reyataz boosts the levels of Atorvastatin in my bloodstream, and my CVS Specialty pharmacist pretty much demanded me stop taking the statin ASAP due to the drug interference from the HIV anti-viral.

So with this knowledge, and no longer being able to take lipitor to treat my elevated cholesterol levels, I resorted to a possible herbal remedy that possibly could work. A friend of mine told me about red yeast rice (RYR), and how it's a naturally occurring statin in herbal pill form. Thinking this would be the the possible treatment I needed, I went out and purchased some capsules from my local drug store, and started taking them. But then it dawned on me, what if, perhaps all statins would interfere with my HIV medication?

I found the answer on page 3 of an article on WebMD that gave me the answer. "In addition, anyone taking one of the following medicines should not use red yeast rice: Protease inhibitors, used to treat HIV." So out of the gate, I'm sort of stuck between a rock and a hard place. RYR may be good for hemophiliacs in general, but for HIV patients on protease inhibitors, there is a drug interaction in which the statin level is boosted, and depending on dosing, could be boosted to unsafe levels.

Now this brings me back to my fish oil supplement. Though fish oil has no direct interactions with any facet of HIV disease, I was told by both my hematologist and pharmacist that the extract does interfere with hemophilia bleeding disorders. It has been documented that prolonged exposure to fish oil in hemophiliacs leads to increased bleeding episodes and possible spontaneous joint/muscle bleeds. LiveStrong.com reports, "Fish oil supplements should also be used with caution by people with hemophilia because they could trigger a severe or life-threatening bleeding episode."

So my problem, and question to not only the hemophilia community, but the HIV family as well, if you have elevated lipids caused by the medications you take for HIV, how are you treating it? Even though my numbers aren't astronomically high, they are elevated enough for me to seek treatment and educate myself in this new world of cholesterol and statins. Any help would be greatly appreciated.

A Video Testimony

Joseph is not only a survivor of the horrors during the dark days of the pharmaceutical industry, but a living miracle by medical standards. Born with severe Hemophilia Type A (less than 1% clotting factor in the bloodstream), the very product used to treat the blood disease (Anti-Hemophiliac Factor VIII) to many became a death sentence in the late 80’s and early 90’s. Plasma pools were riddled with live HIV and Hepatitis C strains from skid-row and prison locations. As a result, Joseph became co-infected (both HIV & HCV) around age 3, trailing a life of extended hospital stays, appointments and never-ending infusions sessions. Today, less than 1.8% of the 12,000 hemophiliacs in the United States are alive. Joseph is one of those fortunate warriors to carry the torch and be that voice for those who no are no longer with us. In 2014, Joseph underwent extensive liver treatment on the new drug called Sovaldi, and within four weeks of a six month therapy, his Hepatitis C virus was no more. Today, Joseph shares his life, struggles and realities of living with debilitating complications resulting from hemophilia related injuries, and maintains a healthy lifestyle with a well controlled HIV anti-viral suppression regimen. He is unique, unfiltered and a survivor; and it's for that reason God is using his life in a major way.

Day 137, Hemophilia Foundation Annual SeaWorld Conference

Every June, The Hemophilia Foundation of Greater Florida hosts an annual conference at SeaWorld of Orlando. This year's topic was a good for parents with children who are hemophiliacs, and how to discipline children with bleeding disorders. I was a rambunctious little handful growing up as a child, always getting into trouble, getting injured and having to take a lot of factor.

Today's topic gave many key points on issues relating to behaviors, parental hovering as an overly protective parent, and methods to be a good parent with a child suffering with a bleeding disorder. The key thing I got out of today's message was the key point on using a child's bleeding disorder as a method of negative reinforcement. Many parents do this without thinking, or do it to be overly protective and the "helicopter parent" who does not let their child thrive, make mistakes and is raised with no baseline of failure and triumph. I thought all the parents there today needed to hear this message, and there were moments of quietness as the "helicopter parenting" aspect was being discussed on stage (and I loved every minute of it). I know often times, a child with a bleeding disorder is a red flag for parents, so their internal instincts kick in to become overly protective, administer all their shots and be there for their every bleed, stumble and moment of weakness. That's not a bad thing if the child is 8 years old, but if you're bleeder is in the later teens, it's time to cut the umbilical cord and let your child learn by their own mistakes, figure out real life problems for themselves and let them choose their own paths.

Closing note on the parenting aspect of a hemophiliac child, and talking from personal experience, let your child learn their disease, and it all starts with education. Getting your child to learn how to administer their factor at an early age, be social, and as much as you don't want it to happen it needs to, make mistakes and failures. Learning from failure is the only way a child will understand trial and error. My parents growing up, loved to hover, but as I grew up, allowed me freedom to venture out to movies at night with friends or dates, instead of demanding me to stay at home in fear of an accident or spontaneous bleed. This was, of course, when I was old enough to drive a car with a license. Too many parents cling to their hemophiliac child as a "disabled for life" status, and the parental instincts, though intended for good, unconsciously can be interpreted as bad. We are hemophiliacs, we are human; with arms, legs, feet, hands, a heart, a brain and a soul. We can be anything we want to be, but the motivation for that starts at home, and with the parent. Are you viewing your hemophiliac child with the mindset, "Mommy's gotta be there to give your shot when you get hurt, so it's better for you stay at home" mentality? That's not only selfish, but your limiting and depriving your child, teen or (gasp) adult son/daughter from fulfilling their potential in life, and changing the world. It all starts with a driven parent with passion in their eyes, pride aside, and grow in the mentality of thinking, "YOU ARE NOT YOUR DISEASE!"

Day 71, Bad Blood [A Cautionary Remix]

A remixed trailer using film footage from the documentary film "Bad Blood: A Cautionary Tale." The footage is meant to convey awareness for Hemophiliacs nationwide and lest we never forget the history of our body of ten thousand and the scandal the drug companies forced upon those dependent on blood products. 

This edit comes from a hemophiliac who endured, suffered and is slaying giants to this day. This remix is dedicated the end of Hemophilia Awareness Month of March 2014. Also, to all my blood brothers/sisters out there today fighting the good fight and limping with swagger. 

The 2014 Polar Plunge For Hemophilia Awareness

Truly an act of love and awareness for ‪#‎Hemophilia‬. My darling family in South Carolina, specifically Regina Bell Baltzegar has took a polar plunge in my honor and for Hemophilia Awareness. The words flee me my dear. I have never in my life had anyone do something so sweet, kind and funny in honor of Hemophilia or me in general. I am so blessed to have such amazing family that love me. Feeling really humble right now.