Life was normal for Brandee.  She lived near the coast and enjoyed water sports, softball, and dance. When she was 10 years old, her brother died of a platelet disorder, idiopathic thrombocytopenic purpura.  Two years later, she experienced her first menstrual cycle which lasted more than 30 days.  After a year of tests, she was diagnosed with von Willebrand’s disease.   Brandee had always bruised easily, but no one thought much about it.  “I got put on the back burner because my family was always dealing with my brother’s issues. I wasn’t constantly in my mom’s care long enough for her to see if something was wrong.”
After losing a son to a bleeding disorder, Brandee’s mom was most fearful of her diagnosis and worried about losing her daughter.  “She kept me very close.”  Brandee’s reaction was quite different.  Being a teenager, initially, her diagnosis seemed insignificant.  “You’re young and you don’t really care.”  
That attitude soon changed.  Her bleeds were very difficult to control and she had to be infused so frequently that she would often go to school with an IV in her arm, which she tried to cover with clothes.  Eventually, it became obvious that her disorder would be much easier to manage at home and Brandee started to homeschool.  Suddenly, her “normal” childhood was anything but normal, and she was missing being around her friends.  Even worse, everyone was placing limitations on the activities in which she could participate, and she did not understand why things like riding jet skis, playing paintball, softball, and dance, activities in which she had always participated, were now off-limits.  

For the next 10 years, Brandee would try to find the right treatment to control bleeds associated with her menstrual cycle, spending lots of time in the ICU for transfusions.  At times, she could not walk three feet without passing out from the extreme blood loss.  One surgeon who has done multiple port placements on Brandee says that she seemed “very annoyed and mad at the world”.  Although she did not agree with that statement at the time, in hindsight she says her doctor’s perception was correct.  “I was hoping that it would just go away; that I could just put it on the back burner and that it would go away.  I just really wanted to be normal and just be a kid.”

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.