By Renae Baker

“When my little brother was born, it was expected that he would have hemophilia B, because my grandfather had it,” Heidi explains.  “When I was born, girls weren’t diagnosed with hemophilia, because – you know…it’s ‘a boy thing.’”

Heidi’s family is from Memphis, and the hematology department for children there is at St.  Jude’s Children’s Hospital.  Fortunately for Heidi, it was deemed necessary for her brother to be seen by a hematologist from the time of his birth.  He was taken to St.  Jude’s where he was diagnosed with hemophilia B.  The research hospital conducted a study on her family, tracking their genealogy so far back that “the chart took up an entire wall!” Heidi exclaims.  “It showed everyone in my family who had hemophilia B and Von Willebrand.  It was crazy!”

St.  Jude wanted to test Heidi and her older sister for carrier status.  Her sister was 18 and had been experiencing bleeding issues her whole life.  Heidi was eight at the time and, although plagued with lengthy nosebleeds, she was not aware of the internal bleeds she was also having.  “I broke my arm seven times, when I was a kid.  Two of those breaks happened before my diagnosis.  My arm would swell so badly, that three days later, the cast would slip right off, because the swelling had gone down!” She remembers being a small child, walking up to her mother with her cast in her hand saying, “Mom, is this normal?”

Her mother knew it wasn’t normal.  Back to the hospital they would go, but the x-rays only revealed the break, not the hemophilia.  Heidi considers herself extremely lucky to have gotten the diagnosis of moderate hemophilia B at an early age.  “The title” as she calls it seems to be a passport of sorts.  She frequently encounters people who doubt her claim that she is a bleeder, and she finds it a relief to be able to trot out the credential of the diagnosis from the esteemed research hospital. 

Once diagnosed, Heidi was told to infuse one day before her period, three days into her period and then only when she had a bleed that was confirmed by her doctors.  Even as a child, she realized this probably wasn’t the optimal course of action.  Heidi was frequently on crutches due to knee bleeds.  “Or I’d hit my toe, and it would swell up to an abnormal size.  We asked to be put on prophy, and they did up my on-demand prescription, but my infusion logs were just not adding up to why I was having so many bleeds, and I was finally put on prophy at age 17.” From then on, Heidi was able to infuse once a week. 

Because of her early diagnosis, Heidi’s parents became connected with the bleeding community in Tennessee and attended the symposiums in New York City presented by The Coalition for Hemophilia B.  It wasn’t until Heidi was 17 that she reached out to the Coalition, on her own, and became connected to other women with hemophilia B.  When she was 20, Heidi attended her first Gen IV meeting.  She has since been to multiple mentorship and advocacy Gen IV events.  “I’m so close with the hemophilia B community now because the Coalition and Gen IV helped me meet all of those people.” Now Heidi is very actively involved with the Coalition.  The Coalition’s acknowledgement and support of female bleeders has been a tremendous help to her because, as she says, “One of the most frustrating things has been having people tell me, to my face, that I can’t have hemophilia.” Indeed, she has even had to hear this from her own father.

“My dad, to this day, likes to think that I don’t have hemophilia, because he just reads the internet and believes everything the internet says.” Heidi laughs through her ascending inflection, as if that statement was a question.  “He’s coming around to it more now, because of how involved I am in the Coalition.  There is so much education within The Coalition for Hemophilia B! I’ve learned so much that I didn’t know before.  Genuinely, it’s a family.  The bleeding disorder community, as a whole, has some of that, but no one has what ‘the B’s’ have!”

“Some days, I might have an elbow bleed and be in so much pain that I feel the weight of the world on my shoulders, and then blow a vein trying to infuse.  That’s the worst,” she continues.  “Thankfully, I have such an amazing husband.  He pushes me and tells me that I’ve got to get it [infusing] done.  If I just can’t, he will do it for me, in spite of the fact that he hates needles.  He’s such a blessing!”

Just past newlywed status, Heidi and Jacob have been together for six years and have known each other since they were babies attending the same church.  He accompanies Heidi to as many Coalition events as possible. 

“Hemophilia is very challenging, painful and stress-inducing, but the family, the connection and the hope that the community gives me are so rewarding.  If I didn’t have hemophilia, I would not be the person I am today,” Heidi says with gratitude, “and I like the person I am today!”

The person she is today has just started nursing school.  “I love learning new things and am especially interested in learning about illnesses and medicine.” Heidi says with a light in her eyes.  “I found a book in an airport store during a layover on our way to our honeymoon.  I read the book, and it motivated me.  So on the plane I said to Jacob, ‘I think I’m going to go to nursing school!’”

Although Heidi’s knees bother her a lot, she has decided that if there is something she wants to do that she is passionate about, she isn’t going to let her hemophilia stop her.  Heidi hears women talk at the meetings, about how they don’t have a diagnosis yet, how they can’t get a doctor or that no one will listen to them, and it really upsets her.

“Once I had my diagnosis from St.  Jude, I didn’t have to worry about all of that anymore.  I feel like I took the easy path and have something like survivor guilt.  There are so many women who have been struggling, who have had such rough childbirths and who feel their bodies breaking down because they’ve been bleeding their whole lives without the help of a diagnosis and treatment.  I feel deeply for them.  It hurts my heart.”

 Heidi tells all the women she meets who are struggling, that she will help in any way she can, whether it’s advocacy, sharing resources and information or recommending doctors she’s heard have had good results.   She offers this advice to women in the community who don’t yet have a diagnosis, or who know that something is wrong and that they need help: “Just keep pushing.  Keep advocating for yourself.  Reach out to other women who can help you advocate - including me.  Don’t give up, because until you have the answers you are looking for, you won’t be living your best life.”