Ivan Giron’s life has been anything but easy, but he was able to overcome his past and find his purpose, even when all the cards were stacked against him. Ivan was born in the city of Bell in Los Angeles County, CA. At 2 years old, he was diagnosed with Moderate Hemophilia A after busting his lip on a toy car. His mother was scared which caused her to be overprotective throughout Ivan’s childhood. She made him wear a helmet and didn’t want him to play any sports. Ivan convinced his mother to let him play soccer once he turned 7, but he was forced to quit once he reached high school because of excessive ankle bleeds from his hemophilia. He says his childhood was difficult because he wanted to be active so badly, and wasn’t able to do the things other kids were participating in. He was competitive, and wasn’t allowed to compete. He was frustrated and often picked on, because no one understood his situation.
Ivan’s father faced a very tough childhood himself, and because he had a hard time coping, he became an alcoholic as an adult. His father was violent, angry, and abused drugs throughout Ivan’s life. He followed fairly close to his father’s example, and joined a gang at just 15 years old. He was angry because of hemophilia and his family life. He saw the other gangs in the community earning money and making a name for themselves, and he wanted those things also. He and several of his friends started their own gang, and quickly began growing their circle. Ivan was buying guns, selling drugs, recruiting new members, and ultimately watching some of his closest friends go to jail.
At the age of 18, Ivan was shot in the right ankle.
Being a young parent isn’t an easy task, but being a young parent and having your child diagnosed with a severe bleeding disorder is something most people never imagine. This was the case for Jeff’s parents. At just 19 years old his mom gave birth to him, and having no family history his diagnosis came with quite the shock. But this didn’t determine his life. As Jeff says “it’s part of your life, not your whole life.”
Jeff was always very active, played competitive baseball, and unofficially played football. He remembers kind of doing his own “prophy” before that was really a thing. And because of this, his only real damage today is a left elbow target joint.
At around the age 15 years old, Jeff found a passion in stock car racing. Which as you can imagine, made his parents very nervous. Jeff said his moms favorite thing to always tell him was “you can do it if the hematologist says it's ok”. The reasoning behind this, is because his parents never wanted to be the reason he was limited in activities. This way the disappointment was left to the doctors and not them. Personally, as a mom of a young Hemophiliac I think this is great advice, and plan to use it in my future battles with out son.
When Jeff turned 18, he got involved with demolition derbies. His exact words were, “I was hooked after my first race! The adrenaline was unmatched!” Although this was not something his mom would have chose for him, she was on board and would bring his factor into the pit so he could infuse right before the race. Jeff also had his car painted to say “STOP! I’m a bleeder!” on the drivers door so anyone who saw it would know.
“I was an adrenaline junky, and hemophilia took a back seat.” Because of the addiction to this feeling, Jeff started only infusing when he absolutely had to. As a result, he was in a terrible ATV (alterraine vehicle) wreck that left him in the hospital for 42 days due to severe injuries and bleeding caused from his hemophilia. During this time, his pain was indescribable. He was on very high doses of IV (intravenous) pain medications. He says, “I remember just wanting out, I couldn’t wait to be able to leave the hospital.”
Leemar Yarde has hemophilia B with an inhibitor, and he lives on the tropical island of Barbados. He is one of six people with hemophilia in his family, but he's the only one with an inhibitor—in fact, the only one on the island with one. So he often meets new
challenges. Growing up in a family with two older, experienced relatives with
hemophilia has its benefits, but here's a little backstory.
Barbados is a developing country. The medical care there is free, and that is
commendable, because many people can’t afford medical care. However, the
downside is that due to the cost of some medicine, the government can only afford
either generic or very limited supplies. Budgets are often allocated to life-
threatening illnesses, and the government doesn’t view hemophilia as one. As a
result, very limited amounts of clotting factor are imported for both types of
hemophilia, and none for inhibitors.
Barbados doesn’t have a hemophilia treatment center (HTC) or even a
medical facility dedicated solely to hemophilia. What we do have is a hematology
center that caters to various blood disorders. That center has a handful of
experienced hematologists; one or two have dealt with inhibitors in different
countries. Sadly, a hematologist can only work with the tools available. Leemar remembers
having to wait from 8 am until 12 pm to see the doctor, then being told that the
hospital had no factor at that time. Still, in Barbados, their fortunate because
some of the neighboring Caribbean islands can’t afford any clotting factor.
So for Leemar, at one point all hope seemed lost...until he met “her.”