Blood Brotherhood is a national program for adult men with a bleeding disorder and provides a sense of community through education and support. The below articles are written by Blood Brothers enrolled in the program and features their stories of what growing up was like during different decades.
I was born in Kentucky in June 1961 with severe hemophilia B. My older brother, born six years before me, was the first diagnosed with hemophilia in the family. My mom had already learned a lot about caring for a son with hemophilia before I arrived and knew the difficulties of the time.
When I was very young, treatment for hemophilia was in the dark ages. We either employed the RICE method (Rest, Ice, Compression, Elevation) or we went to the hospital to receive whole blood transfusions. The problem with this was they took about eight hours for the glass bottle of blood to drip into my veins. This meant that from the onset of a hemorrhage, to the time the bleeding would stop, could be quite a lot of time-upwards of 20 hours. We had to be admitted to the hospital for about a week for an ordinary knee, ankle or elbow bleed and kept on bed rest- which meant having to use the ever dreaded bedpan and little if any physical therapy before discharge. I can remember getting my first pair of crutches at the age of four and my mom crying the day she taught me to use them. We wound up switching to fresh frozen plasma, which took a little less time to transfuse, but still similar treatment. We didn’t get clotting factor concentrates until the early 1970s and then started home treatment around 1974. Because we didn’t have access to factor at home at an early age, we wound up with vast amounts of joint damage and pain. Being able to infuse at home was such a major relief from being “incarcerated” in the hospital and it meant the pain would diminish sooner and cause less overall joint damage.
The darkest of ages for hemophilia care was in the 1980s when I was intentionally infected with HIV and HCV through the plasma derived clotting factor concentrates. Quite ironically, I thought I was taking something to protect my life when in reality it was giving me viruses that could take my life. I am very thankful to be part of the few still alive today. Our community lost way too many blood brothers and blood sisters to a dark time in history.
Even though I had some extremely difficult times, God has used hemophilia as a blessing in my life. I have been given an extended family that I’m very close to and have been made aware that life is precious. I believe that I have a better appreciation of each day because of hemophilia. The way I see it is …. “I woke up this morning and was NOT in hell or the hospital; it’s a good day!”
Carl lives in Kentucky with Gwyneth (his wife of 31 years), is a past President of HFA, and has severe Hemophilia B.
I was born in Massachusetts on the first day of spring, March 20th, 1980. My mother’s brother, Donald Colburn, had severe hemophilia A, so she knew she was a likely carrier. My brother, who was born two years, two months, two weeks and two days before me was not born with hemophilia. So when you do the math of her sons having a 50% chance of having hemophilia, I was born with the odds against me, and in this case, the house won. I was tested right away and was quickly diagnosed with severe hemophilia A. In addition to my hemophilia, I was also born with two clubfeet (my feet were pointing inwards instead of straight forward).
Our HTC was about an hour or so away from our home, so we typically would go to our pediatrician’s office when we had any non-major issues.
I was nine months old when I got my first bleed. It was a bleed in my cheek and my parents were not sure how I got it. My mother brought me to my pediatrician’s office where I received my first dose of factor. We would continue to only infuse when I had a bleed (on-demand), as prophylaxis wasn’t really an option at that time in the US.
At the age of two, I decided it would be fun to pull out one of my brother’s dresser drawers when my parents were not looking. It was a Friday and I must have been excited about the weekend coming up because I climbed up on the drawer to shake my groove thing. Unfortunately, I wasn’t the talented dancer I am today. I slipped and fell hitting my chin on the drawer and bit my tongue. We went to my pediatrician’s office first and got my factor, spending the whole day there. When the bleeding didn’t stop, they sent us to the hospital associated with my HTC where I spent another three days. I bled for so long and lost so much blood, I almost bled to death. They couldn’t hit my veins because there wasn’t any blood left in them, so they did a cut down in my elbow. They had to slice through my skin to try to infuse the vein while holding it. That didn’t work so then they did another cut down above my ankle and luckily found a vein there that they could infuse. I cannot imagine how hard this was on my parents. I still have the scars on my elbow and leg from the cuts. They are a great reminder of how precious life is and that’s why I could never take this life I have for granted.
At the age of six, they were getting ready to do my big surgery to correct my clubfeet. Right before the surgery they tested my blood and found out I had an inhibitor, so the surgery was somehow only postponed a couple days until they figured out what my factor dosage should be. Looking back, I cannot believe they still did the surgery with the inhibitor. I was essentially living in the hospital with my mother for six weeks. I had big clunky casts on both legs and big metal pins going through my leg. After the surgery, they had me infusing every other day because they could not see through the casts to see if I was having bleeds in my ankles.
There were many differences in hemophilia treatment in the 1980s as compared to today. I never had a port as a child, even when I had the inhibitor. Also, we never had nurses come for home infusions. My mother would bring me to my pediatrician’s office to get infused. When I was around the age of two, the nurse at my HTC taught my mother how to infuse me. She even let my mother practice once on her. For the next four to five years my mom would infuse me at home, and then when I was six or seven years old, I learned how to self-infuse.
It is impossible to talk about what it was like living in the 1980s with hemophilia without talking about HIV/AIDS. I did contract HIV and Hepatitis C in the 1980s and was told I was HIV positive in the early 1990s. I spent many days traveling the country with other youth living with HIV educating colleges, high schools, youth groups, talk shows, businesses, and anyone who would listen. The majority of the kids I traveled around with are only with me in spirit today. It was quite an experience to be an infected and affected kid during that time.
When I think about what was unique about having hemophilia in the 1980s, besides the tainted blood tragedy, I think I’d have to say independence. Families wanted to be and were encouraged to be more independent, for better or worse. With the innovation of factor and home infusion, everyone wanted to take advantage of that, and really see how far these innovations could take us toward s having that “normal life” most hemophiliacs dreamt of in the preceding decades. It was very powerful.
To me, at times, it can feel like families living with hemophilia today, are being pulled in the opposite direction. It may be because we have more tests and tools and information available today. So when a child has a bleed, there is more an HTC can do to treat that bleed. But I feel like a larger reason why parents are encouraged to call or visit their HTC every time their child has a bleed is because the standards have changed.
In the 1980s, families and providers just lived through the 1950s and 1960s where it was common for someone with hemophilia to be bedridden more days than not, with a very poor quality of life. Now in the 1980s we can infuse at home with medicine that worked and bleeds were treated quickly. So when you did get a bleed once a week or once every couple of weeks-that was a huge success. We were told to treat every day if you get a bleed, twice a day if it’s a bad bleed, or use a double dose if it’s a really bad bleed. That’s it. Maybe throw some ice or raw bacon on it too. Whereas today, having a bleed at all, even just one, is almost unacceptable or a big issue that requires parents to take their child to the HTC or ER. The standard has changed-and that’s a great thing.
Mark lives with his wife, Sasha, and 15-month old twin daughters in Connecticut. He is the Director of Marketing at American Homecare Federation (AHF), on the board of directors of the AIDS Foundation of W. Mass, and is a Founder of the Connecticut Hemophilia Society. Mark is also a previous recipient of HFA’s Ron Neiderman Humanitarian Award.
Jozef | Factor VII Deficiency | 2000s
I was born in 1991 with Factor VII deficiency; the year that Nirvana released Nevermind and a gallon of gas cost $1.12. Needless to say, it was a great year all around. Growing up during the 1990s and the early 2000s meant different things to different people. For the bleeding disorders community, it was year zero. The dust was just beginning to clear from the epidemic of co-infections that racked the community and the advocates that fought for justice for the families that were denied care during this period of indiscretion. However, being born in 1991 means I was too young to understand the gravity of a lot of these situations. One of the biggest issues that I grew up with was that my factor product hadn’t been approved by the FDA until I was almost 10 years old. For several years, I lived with sleep apnea and needed my adenoids to be removed before I would ever get a decent night’s sleep. Years of restless sleep had a detrimental effect on my daily life and left me “zombified” with no end in sight. The thought of using a new factor product scared doctors and it was years after my product was approved that a surgeon finally agreed to work with me.
This era seemed to bring bleeding disorders into the mainstream. Suddenly that weird disease your cousin’s-neighbor’s-sister’s-boyfriend had was something you heard about on the news and was in the vocabulary of celebrities and politicians. It was real, and so was the residual stigma. Hemophilia was hard enough to explain, it was harder to explain that not all hemophiliacs died from paper cuts and/or had HIV/AIDS and even harder to explain that what I had wasn’t hemophilia. This serious misunderstanding caused havoc for many, including myself, who were denied certain types of insurance because of being a “high risk.” (If you know me, “high risk” are two of the last words you would probably use to describe me. If you don’t know me, my hobbies include not watching sports and playing guitar. High risk indeed, but I digress.)
Another stigma that came with having a bleeding disorder was that it was perceived as unmanageable. Growing up, and even now, there are people in the world who treat me like I didn’t, and still don’t, know what I’m doing simply because of how chaotic they perceive my bleeding disorder to be. Things are getting better for the average patient, but there are still major steps to be taken. We have spent the last 20 years always moving forward-remembering the past, but never taking our eye off the goal. Growing up during the 1990s and 2000s was a great time to grow up as a “bleeder.” However, this generation, like each before and after, had its unique trials and tribulations with a reward to be reaped and passed on to the following generation. We are coming up as the next leaders of the community, and with our collective experience, we aim to give something back to the community that has given us so much.
Jozef lives in Wisconsin. He is a patient advocate for ASAP Pharmacy.