Blog: Random Thoughts from a Venerable Hemophiliac 

At 73 and retired, I can look back on life, and wonder how I got to where I am. 

Seventy-three is old. You appreciate social security, Medicare, pensions, and the occasional days where arthritis isn’t winning the joint battle. 

You appreciate your high school girlfriend who became your wife of 52 years, your adult sons and daughters-in-law, and the joy of watching six grandchildren grow up. You’re forever grateful that your grandchildren do not have hemophilia, but you’re also aware that there are a multitude of diseases that can come along at any time and can be far worse. 

In elementary school, the hematologist told my folks that I would die in my 20s.  He told me about a patient who cut his tongue licking an envelope and bled to death. I can assure you that in the last 6 decades I have not licked an envelope once. 

So why am I still alive and annoying folks so many decades later.  Certainly, a big portion of the credit goes to my mom who taught me the risk/reward calculation – the joy of trying to ride a bike is not nearly as great as the pain in your knee that will last a whole week. And eventually lead to arthritis and knee replacements. A lot of credit goes to doctors for being able to use the best available treatment to keep me as healthy as possible.   

And don’t forget the pharma companies. They may be making a ton of money from hemophilia patients, but their contribution is the reason most of us are alive. Certainly, they’ve made serious mistakes, and HIV and hepatitis C virus (HCV) are the price this community is paying for sloppy management. 

If all you knew about hemophilia was what you read on Facebook, you’d think this is a community with an ongoing tragic, untreatable situation.  You’ll hear from people who are certain they know more than the doctors—people who are thriving because of the pharma drug yet insist that pharma is hurting our community. You’ll notice that, like politics, there is a small group of very loud people who claim to represent the majority. They do not represent the majority and should not. 

Most hemophiliacs, and particularly those younger than me, are leading essentially normal lives. They have jobs and families, and the joys and pains of raising children. They might have an occasional bleed, but it’s probably able to be treated in their house. No ER visit when you slip and hurt your elbow.  Most hemophiliacs get on with life, and do not obsess over the limitations that come with the condition. We’re a resilient bunch and we found out early on that whining isn’t a solution. 

But there is a small group of hemophiliacs who seem to take joy in pointing out that hemophiliacs still have problems. Do you know anyone, with or without a chronic disease, that doesn’t have problems.  

And I’m not suggesting that everything is perfect. There are inequities in access to care. The health care system is difficult to navigate, and folks on Medicaid have limited options. Women are not getting access to the same quality care that men have, and people in developing countries have none of the improvements we take for granted. Plenty of room for improvement but let’s not forget how far we’ve advanced. 

So, if you’re a young family with a newly diagnosed child, stop following Facebook whiners. Find some people who have been where you are and landed in a happy, healthy and ‘normal’ place. Don’t believe that the system is broken, and your kid is doomed. We’ve got doctors, lawyers, collegiate baseball players, farmers, teachers, musicians, clerks, felons, and druggies in our community – pretty much the same as in the rest of society.    

We’re not broken. We’re not a sad story. We’re doing just fine. 

Joe Markowitz is the former president and current Board Member of HANJ, and serves on HFA’s board.

*Note: Infusing Love and other blogs on HFA’s website are a collection of personal opinions and a representation of the author’s experiences. While extensive efforts are made to ensure accuracy of the content, the blog is not intended to be construed as medical advice and is not the official opinion or position of HFA, its staff or its Board of Directors.