Kathy MacKay met David in 1985 when she moved to Nashua, NH. She referred to him as "the boy next
door." They sparked up a relationship pretty quickly, and that is when she learned he had hemophilia.
She infused him three times early on and stated that she did not know if he asked her to do that because he just wanted an excuse to come over or if he really did need her help. She said that she always ac-
cepted David's Hemophilia.

They had read about the Ryan White story in the news and knew about the issues with the blood supply.
Kathy asked David if he had been tested for HTLV-III or now know as HIV. He said he tested negative. So
she did not think much more of it because the blood supply was allegedly safe. A little under a year later,
he was tested again, and at that time, he tested positive. His doctor then offered her a chance to ask
questions because they were both concerned. Kathy immediately made an appointment to address her
questions.

David's doctor said he wasn't concerned about him progressing to AIDS at the time because of his infrequent infusions. Also, they found out he had been exposed to Hepatitis B and C, then referred to as non-A, non-B. Again, the doctor told them there was little to worry about. Kathy remembers him saying "all hemophiliacs have been exposed to Hepatitis, and it only affects a small percentage of patients. It is an acceptable risk." Kathy heard what she wanted to hear from the doctor. Kathy reflects, "I wasn't smart enough then to really think about what that meant. I heard what I wanted to hear about HIV, so I think in my head, I just accepted what the doctor said." This was before the internet, and doing research was not easy.

As time went on, David was doing well, and he proposed to Kathy. They married in August of 1987.
Every once in a while, his T-cells would dip a little bit, and they would get nervous, but they always
bounced back up. David was asymptomatic and never met the criteria for an AIDS diagnosis. Because
their future was looking bright, they decided to start a family. They had two boys: Ryan, who is now 27, and Dustin, who is now 31. They took all the necessary pre- cautions to minimize the risks of Kathy contracting HIV. They made it through both pregnancies, and neither Kathy nor the children contracted HIV. Kathy had to be tested frequently. "I lived my life being tested for HIV, but I lived my life."

In the summer of 1994, David had a bad hip injury and could not work his summer job as a camp counselor. He was a special education teacher and was really looking forward to working at summer camp that year. Due to his bleeds and a series of respiratory infections, it caused him to face Hemophilia and HIV's circumstances even more. It was during this time that David started to have issues with depression. For the most part, he kept his feelings to himself. In retrospect, Kathy wishes that David could have shared his fears and worries more openly. 

​When Kathy is asked, "what was more of a challenge," hemophilia or the viruses, Kathy said it was the viruses that really made her upset. "My life had never been perfect. I always faced challenges along the way.” it was just a challenge, but the viruses could have been prevented. Kathy goes into greater detail on how the blood products became contaminated and how the psychological effects impacted the people in her upcoming memoir, "Unacceptable Risk."

Ed grew up with three brothers that all had been diagnosed with hemophilia. Each of the three brothers lived with it and learned to have a full life despite their bleeding disorder. He was the middle child. His mother was two years old when Ed's grandfather, her father, died from hemophilia. He also had two cousins that had hemophilia. He stated, "I was never alone." They were a family that believed life should be lived and did not let Hemophilia limit their lives.

  Ed and his brothers hung out together. When they developed a bleed, they would stay on the couch with ice unless it was really bad, and then they would go to the hospital. Ed stated his parents were cool. The boys would play sandlot baseball and only had one rule, "if you get hurt, you get the ice packs and go to the couch. No Complaining." He recalls one time that he ran into the front door, and one of his brothers ran into the back door, and both of them were holding their noses and discussing how they got their injuries. They always had a sense of humor related to their hemophilia.  

  When factor became available, Ed learned to self-infuse at camp. This was life-changing. They could address the bleed without disrupting the family to go to the hospital for cryoprecipitate and have much quicker relief. Since Ed was so efficient at self infusing, he started to infuse his brothers. At that time, the doctor wanted the nurses to do the infusions, but they got a neighbor that was a nurse to sign the form from the doctor, and then he was able to infuse himself and his two brothers.  
​
  Ed played ice hockey for two years and didn't tell his parents. His greatest fear, other than his mom finding out, was losing a tooth. This was because "the blood would ooze out while I was sleeping, and I would wake up with my room looking like a Quentin Tarantino movie." And he was afraid of dying from a lost tooth. His hockey career ended after a bad fall on the ice. His younger brother, Michael, was a heavyweight wrestler in high school. After breaking the school record, Michael's pediatrician told the school he needed a letter stating he wouldn't get injured.  

  Ed picked up guitar while waiting for his bleeds to resolve. This had provided one healthy joint and has given him a life long hobby and pleasure. Ed still plays guitar in a band called Breaking all the rules. The band plays in local sports bars and night clubs. A much more sustainable hobby than Ice Hockey. Ed says, "I wouldn't have missed out on any of my adventures."

• Tell me about your hemophilia story. 

My hemophilia story began in 2008 when I met my best friend, Kane! We were unaccompanied minors that shared the same connecting flight. We ended up going to the same music camp for the summer! Since we lived in different states, after camp, we friended each other on Myspace to keep in touch each other! During camp, he briefly mentioned that he had Hemophilia, but I had no idea what that meant at the time. He use to post videos of when he would infuse himself for a bleed and it was scary! I had an unhealthy fear of needles, so I never made it all the way through the video.
In 2011, we started dating. Then in 2015 we were married! All throughout our years of dating, his hemophilia was never an issue because we lived in different states and were rarely together during his bleeding episodes. A few weeks into our first year of marriage, Kane had an accident at work and was unable to walk for a few days because of a bleed. He was fired from his job shortly after for missing too many days without a doctor’s note. This was the first bleed in all of the years knowing each other that I was able to witness. This is when his hemophilia became real for me. After our long struggle with getting his health and medical record on track, we are now managing his hemophilia, instead of his hemophilia managing our lives! 
Being the wife to a hemophiliac has shaped my career path to patient advocacy in the legal field. Sharing the challenges we have faced during these last five years of marriage on podcasts and similar outlets, has only solidified my passion for our hemo family. This is what keeps me excited to see where our hemophilia journey leads us!

• What was it like to go through the learning process of hemophilia? 

We actually learned about his hemophilia together! He did not have stability or a local HTC growing up, so he knew just about as much as I did. It was hard for both of us emotionally. He was not very well educated in his own diagnosis, and I was still learning myself. It was very discouraging at times. When I called the hospitals and doctor's offices that treated him when he was a child, a majority of the records had been destroyed during Hurricane Katrina. His adolescent medical records lacked consistency and many years of information were missing. It was very difficult getting him established without the original diagnosing medical records. Since he had no insurance, we could not afford the tests to get diagnosed, nor able to get time off of work to take the tests necessary to get a new diagnosis. Over the last 5 years of our marriage, we have learned the ins and outs of his hemophilia (so far), and we have done it the hard way. However, I am so glad that we learned it together. We have been each other’s sounding board, and I know that his hemophilia diagnosis has brought us closer together.
​

“Your life with Hemophilia has a purpose. You are fearfully and wonderfully made by God, who loves you. Turn your struggle into your story and use it to impact others.” -Lindy
Before becoming a mom to Lincoln, Lindy & her husband, Ben struggled to get pregnant. They were almost to the point of defeat when they received a prophetic word at church on Mother’s Day, 2014. Her pastor said to the congregation, she felt like she was talking to someone directly and that “this time next year, you will be holding a son.”  Lindy found out two months later she was pregnant, and Lincoln arrived precisely one month before Mother’s Day 2015. She knew that her son would do great things and have an amazing testimony to share because he was truly a gift from God that she had prayed for. 
When Lincoln was about 4 months old, they started noticing some abnormal bruising on his body. At first, they shrugged it off and thought he would be an easy bruiser like she was. But when the bruising increased in size and frequency, she started pressing their doctor for answers. After lots of appointments and tests without answers, they finally decided to change doctors. In December of 2015, at 8 months old, Lincoln was diagnosed with Severe Hemophilia B. A surprise diagnosis as there was no history of the disorder in her family. 
Lindy remembers that for several months following the diagnosis, she thought they’d gotten it wrong because they were dealing with none of the things she was reading about the condition. Outside of the bruising, Lincoln was a healthy and happy baby boy! The Hemophilia diagnosis came to reality when Lincoln fell at 15 months old, and they were unable to get his mouth to stop bleeding. She remembers taking him to the hospital for his first factor infusion and how scary of an experience it was for them. Then, in October 2016, at 18 months old, Lincoln developed his first joint bleed in his ankle. That’s when they began pushing for a prophylactic treatment plan but ran into several obstacles with both his HTC (Hemophilia Treatment Center) and their local hospital. For 6 weeks they were sent to the ER 8 times due to reoccurring bleeds in the ankle. By late November they were finally set up to receive weekly factor infusions at the local hospital. His prophylactic treatment was going great for about ten months. Then, in September 2017, Lincoln fell in the bathtub and hit his mouth causing a bleed in his gums. After dealing with this mouth bleed for over a week and not receiving adequate help or support from their HTC, they decided to change to a new doctor and treatment center. Their new HTC immediately made them feel like they were at home. They felt loved and truly accepted for the first time in Lincoln’s hemophilia journey. Lindy addressed some issues they had been having with Lincoln’s care with their new hematologist. She told the new doctor that Lincoln had been having more frequent breakthrough bleeding, and he explained that he believes Lincoln was under-dosed. It was agreed to change his medication to try out a longer-acting factor. Luckily, they were still going to an infusion center to receive his factor because, during the first infusion with the new medication, Lincoln experienced an allergic reaction to this new medication. This caused him to go into anaphylactic shock. His nurse, who had done his infusions for over a year, immediately knew what was happening, and Lindy accounts for her fast reaction to helping save Lincoln’s life. After the injection began, Lincoln started pointing to his tongue and coughing, and he was holding his stomach, saying it hurt. Lindy said, “something is wrong, he’s having a reaction!” His nurse immediately pulled the needle and picked Lincoln up, and they all ran across the hospital to the ER so that he could get the treatment he needed STAT. While running across the hospital, Lincoln was turning red and vomiting. Lindy remembers thinking that this was the scariest moment of her life, up to that point. There would be many more scary moments in his journey in the months to come.

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. 

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