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.
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")
Today, Debbie de la Riva is a champion in the hemophilia community. Her experience in social work and community advocacy in the bleeding disorder community is echoing across the nation. However, 20 years ago she had never heard of the disease. She discovered she was a carrier when her son was born in 1994. Since then she has spent her career passionately advocating for the hemophilia community.
Debbie and her husband Jorge made it a priority to attend the memorial session at each annual meeting in order to learn more about all the history and tragedy that occurred in the community in the past generation. While she and her family have become incredibly involved, It wasn’t until the tragic death of their friend and the hemophilia communities beloved Barry Haarde that Debbie recognized the austerity of depression among people living with hemophilia. “If this can happen to this superhero prototype, what else is going on in our community?” Debbie described her revelation of how common depression in the hemophilia community is, and it motivated her to learn more. She was enlightened to learn that depression in the bleeding disorder community was a bigger problem than what was currently being discussed and wanted to do something about it.
Marc Pangilinan is a man of many firsts. He is a first generation (native-born) citizen in his family. He is also the first person to be diagnosed with hemophilia.
Marc’s parents are originally from the Philippines, where the culture tends to be very private. Because of this, Marc did not participate in the hemophilia community growing up. He visited his HTC (Hemophilia Treatment Center) when it was necessary, but he knew no one else with hemophilia until he was 26 years old. Marc was born in 1987, during a time when hemophilia wasn’t very well understood and parents were afraid to let their children play with anyone that had hemophilia. Marc felt very alone.
Because Marc was born in the 80’s, he was among some of the first to receive factor as the primary method of treatment. Besides being considered experimental, there was a shortage of it and it was very expensive to obtain. This meant that Marc did not get factor like he should have, which lead to his ankle becoming a major target joint. Luckily, Marc’s mother was a nurse and helped Marc stay on track when it came to infusions. Marc likes to say he was “sheltered not babied.” His mom instilled in him the belief that this was the life he was given so he needed to live it to the best of his ability. This helped Marc become independent and okay with being alone while having hemophilia.