 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.”  Arlo Smith was born to Tara and Adam on August 10, 2016. Tara noticed that Arlo had bruises every once in a while, during his first few months. Being a large newborn, when he was held he was held tight. A few months later, Arlo had a bruise on the back of his leg, where his leg would sit on your hip. After multiple instances, his parents decided to ask the pediatrician for a second opinion. The doctor was not concerned and agreed that he was a large baby so he would have bruises. At the six-month check-up, red flags were showed when a tennis ball bruise appeared on his stomach. When Arlo’s pediatrician examined the hematoma on his stomach, she decided to run some blood tests to appease Tara and Adam’s concerns. When the results came back, Tara explains, “The pediatrician told us, ‘It’s definitely not hemophilia.’” temporarily extinguishing the hemophilia scare.
Tara and Adam returned to the pediatrician a couple of weeks later with Arlo having even more bruises and they were recommended to a specialist at Vanderbilt hematology for further testing. They went into the appointment with a positive attitude and felt like, it was probably nothing. As the hematologist examined Arlo, he made it clear that the bruising was abnormal, and something was going on. After blood work, chest x-rays to determine if Arlo had a broken rib, and conversations about the people that were exposed to Arlo, they received the confirmation phone call with the lab results. The nurse continued to confirm that Arlo’s factor levels were less than 1%, concluding the diagnosis of severe factor IX deficiency. Tara, in a state of shock, told Adam the results. They did not have any known family history of hemophilia. Tara shakily describes that moment, “For me, I just felt like he (Arlo) had died”. Tara felt as if she was grieving the death of a dream of the life she thought Arlo would have lived without hemophilia. The first couple of weeks, the Smith’s struggled both physically and emotionally. “It was really weird getting a diagnosis like this and then having to tell people. I’ve never had to tell people such tough news before.” Tara said. Trying to process how to tell people about the diagnosis and if they even should tell people was a learning curve. People would ask Tara and Adam questions to dig for something that would help them find the happy ending to the story. Ultimately, they learned that not everything wraps up with a little bow.  Becoming new parents is often overwhelming and scary. When you add in living in a foreign country with an unexpected rare medical condition, overwhelming is suddenly an understatement. This was the case for middle school sweethearts Brittnee and Rick Vasil. After hearing their story, you will quickly realize they never let fear decide their fate. Brittnee and Rick began their relationship at just twelve years old which continued throughout high school, only breaking for a brief period during college. During that time, Rick joined the military and soon after reconnected with Brittnee. Three days after Rick completed boot camp they married, and three days after that he was sent to Japan. Brittnee was able to visit during the three years he was stationed there until Rick was relocated to Rhode Island, where they were finally able to start their life together. After six months in Rhode Island, they were sent back to Japan together and soon after, decided it was time to start a family. One year later, Brittnee was carrying their first child. Her pregnancy was fairly smooth until twenty-five weeks when she developed gestational diabetes. Brittnee did not agree with the care plan given by her Japanese doctor and decided to transfer her care to an American physician. Due to the transition in care, she and Rick would travel about six hours from their home in Sasebo, to the closest naval hospital in Yokosuka, Japan. An induction was scheduled at 38 weeks, due to the risks of gestational diabetes. During their tour of the birthing facility, they were shown the process of a baby being transported to another hospital NICU in the event of complications. Brittnee waved off the information since she felt they wouldn’t need it.  In 1828 when Hemophilia got its name, no one knew how many people were affected, how far it would stretch, how it was contracted or how it would spread. It was primarily known by its visible impacts and the pain experienced from uncontrolled internal bleeding.
Through the years, it has taken hundreds of dedicated researchers, physicians, nurses, parents, patients, and caregivers to make a difference. It has taken thousands of painful bleeds, tens of thousands of days, hundreds of thousands of hours, and millions of donors of blood to affect change for our community. Just 40 years ago, hemophilia was frequently referred to as the "crippling disease" with a shortened lifespan, and today it is a manageable disorder with a strong support network. We have Comprehensive Treatment Centers, ongoing research for advanced therapies, the potential of a cure, essential policy initiatives, and practical and emotional support.
It is rare to meet someone who has hemophilia that is grateful for it and the opportunities it has brought to their life. Vohn Dumdumaya was diagnosed with Severe Hemophilia A at seven years old after a tooth extraction which caused excessive bleeding. Although Vohn was diagnosed fairly late in life for a person with severe hemophilia, his parents Stan and Jenny Dumdumaya, are extremely thankful there weren’t any major incidents prior to finding out. He was born in 1992, during a time when hemophilia had recently become safer to treat and easier to manage.
Vohn’s parents were very proactive in his care, and became very involved in the hemophilia community. He owes all of his success and ability to manage his hemophilia to their support and active role in his life. After he was diagnosed, his parents did become over protective; Vohn wore a red baseball helmet to school and wasn’t allowed to play sports. The hospital was only a mile from their home, so he and his parents walked there for treatment every other day. Vohn’s two younger siblings, Angela and Jaden, are not affected by hemophilia, but are also active in the community. Although Vohn was told he couldn’t play sports after being diagnosed with hemophilia, he had already been playing golf since age two. He was very relieved when his hematologist actually suggested golf as a way to stay active, so he was able to continue playing. He played in a fundraiser tournament hosted by an industry leader in the hemophilia community and was the first patient to win the tournament. Vohn was ecstatic to be able to support the hemophilia community by doing what he loved. He continued to play golf throughout high school and into college. He was always known as the kid who had hemophilia and played golf; he says he loved and embraced that description of his life.  During my pregnancy I was labeled as “high risk”, due to bleeding complications. After 13 weeks, I was placed on strict bed-rest. With many trips to the ER, when I was 24 weeks I was admitted to the hospital. Christian was born at 27 weeks (August 2007) and weighed only 2 lbs & 9 oz. After I was released from the hospital I returned to work and would commute over an hour one-way to be with Christian until visiting hours were over. On the weekends I stayed at the Ronald McDonald house and I would spend the days beside Christian’s incubator. On Christians 13th day of life I arrived at the hospital to find a PICC line was placed on the top of my son's head. The doctors informed me that during a PICC placement procedure Christian lost too much blood and now required a blood transfusion. As soon as I was able to gather my emotions I called Christian’s biological father and he was able to go to the blood bank to provide the blood that Christian needed for the transfusion. As a new mother coping with postpartum coming in for my daily visits to see a PICC line in Christians head was devastating, but then to find out that a blood transfusion was needed was completely heart wrenching. (((Christians father never saw any reason to visit Christian more than once a month while Christian was in the NICU, because the doctors were more than qualified to take care of Christian. So I made all but 1 trip a month by myself, which also did not help with the post-partum))) Christian remained in the NICU for just over 3 months before he was able to come home. Prior to Christian being released from the hospital we were provided information for a Urologist to contact for the circumcision to be done after Christian was able to meet the minimum weight requirement. Three months later Christian was eligible for the procedure to be completed. After the circumcision and several trips back to the urologist due to the amount of bleeding Christian was experiencing. I was told that I was an overprotective paranoid new parent and not to worry that the bleeding would eventually stop and that this was normal. Weeks later the incision did heal, but still no tests were even suggested or done for Hemophilia.
 Finding a passion and being able to live out that passion is a rare experience. This is definitely the case for Dr. Joseph Moleski. Joe was diagnosed with Severe Hemophilia A at six months old due to a joint bleed in his knee. There was no family history of hemophilia so his parents were quite surprised by the diagnosis. Fortunately, Joe’s parents were very supportive throughout his childhood and allowed him to live as normal as possible. They were cautious but also compromised with Joe when it came to sports and physical activities. Joe enjoyed basketball and several other sports during his childhood. Joe’s younger brother, who also has severe hemophilia a, plays basketball and is very active.
Joe suffered a few major injuries while he was growing up. He had two shoulder surgeries, because those were his targets joints. Since surgery, he has full range of motion in both shoulders now. At the age of 13, when Joe’s younger brother was born, he decided it was time to be in control of his health and set an example for his brother. He began self-infusing and being more proactive about his prophylaxis schedule. Joe wanted to be more independent and also set a positive example. This was the first major turning point in Joe’s life. He wasn’t going to let hemophilia define him; he was going to take control of his health as much as possible. The second major change in Joe’s life came when he was a junior in high school. He hadn’t focused on his grades at all up to this point. He was living a positive life in other areas, but school was a struggle due to bullying and being misunderstood. Joe decided it was time to change his grades, he set a goal to have a 4.0 grade average. He applied himself in math and science, and a few months later, he reached that goal with a perfect average. He decided at that moment, he was going to use those abilities to help others. Joe knew he wanted to go into the medical field.  Jonathan James - 3rd ankle surgery Here are 5 things I've learned from living through a crisis...
As we all learn how to respond to the COVID-19 crisis, it has made me reflect on previous lessons I've learned from going through past crises. You might decide to unfriend me or, at the very least, not stand next to me during a lightning storm after you hear this, but here goes. I have gone through more than my fair share of crisis in my lifetime. From living through hurricane Katrina in New Orleans, getting married during 911 travel restrictions, starting a career in financial planning after the 2001 market crash, working as a stockbroker during the great recession of 2008, having ten significant surgeries as a person with a bleeding disorder, losing a child, extreme financial hardships, the threat of HIV, Hepatitis B & C, and so much more. After all of these events, I can say I have learned a lot, but there are a few things that stick out that I believe might be helpful to us all while we face this new crisis of a worldwide pandemic. Here are 5 things that I have learned that have helped me when trying to survive a crisis. 1 - Evaluate - Assess the circumstances, take a breath, and organize your priorities 2 - Educate - Remember the resources you DO have, embrace your losses, look for new opportunities 3 - Articulate - Communication is critical, staying positive is essential and defining next steps is vital 4 - Take action - Move forward, pivot away from things that don't work quickly, and set short goals 5 - Rest - Take care of you (Continue reading by clicking "Read More") |
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