Bridging the Gap Between Diagnosing and Treating Women

By: Renae Baker

“I knew that my family had something wrong with their blood, but I didn’t know what. Everybody in my family bruised and had bleeding issues, and they just called themselves ‘free bleeders,’” Stormy says with a laugh. She didn’t realize that her frequent pain and swollen ankles were caused by something more than her childhood play. “We lived in the country, so I was always falling into holes. I remember limping around a lot, but it was just like, ‘Whatever!’”

Stormy grew up in North Florida and was one of seven daughters. Their mother hemorrhaged after every birth and ended up back in the hospital. Most of the daughters had terrible periods and early hysterectomies. Stormy had her hysterectomy at 33. “When I look back, I can remember every time I would lose a molar, I’d wake up, and my hair would be plastered to the pillow from the dried blood. I thought, ‘That’s just what happens.’ I remember my very first period,” she laughs. “I was at Disney. I was exhausted, not feeling good, and we had one of those old-fashioned photos taken. I was just like [she makes a miserable face that doesn’t reflect the “magic” of Disney.”

Stormy reveals that her periods were always bad. Even on hormone pills, she never bled for less than ten days each month. 45-day stretches of bleeding were not uncommon. As she looks back at the extensive periods, pain, and gum bleeding, and continually being told that these were “just female things” and that “some women just bleed like that,” Stormy is infuriated. Her severe endometriosis led to a laparoscopy and blood transfusion at the age of 18. After a few more of these procedures, her doctor put her on male hormone injections and a two-year course of a contraception pill that would put her into a state of menopause by the age of 21. “Back then, I was so desperate and so young that I didn’t ask questions. If they said, ‘Do it,’ I said ‘OKAY!’”

Stormy married Craig, and they moved to Germany where he was stationed in the US Army. While still newlyweds and living overseas, their doctor advised them that because of Stormy’s endometriosis, they would have to act quickly if they wanted to have children. That wasn’t their plan, but they followed the doctor’s orders. After two miscarriages, their daughter, Whitney, was born. Five years and a third miscarriage later, their son, Collin, was born in 1999. After yet another miscarriage and enduring almost non-stop bleeding and excruciating pain, Stormy and Craig decided they were done trying for more children, and Stormy had her hysterectomy. “I always said I wanted six kids, and I got six; just not all here on earth with me.”

Once Collin was diagnosed with mild hemophilia B at age three, Stormy became heavily involved in the bleeding disorder community. She homeschooled Whitney and Collin, and as a busy mom, she noticed that her ankle had swollen to an alarming size. She consulted a doctor about it, but was told that she was not taking care of herself, given her son’s hemophilia. Stormy then saw an orthopedic doctor, who showed concern for her ankle but Stormy felt that the extent of his concern was the too-familiar “Whatever.” Due to other joint pain she was experiencing, the doctor referred her to a rheumatologist. This specialist told Stormy that all she needed was Prozac and that there was nothing wrong with her. Stormy knew that her pain was not caused by clinical depression and that she was not imagining it, but the doctors were not taking her seriously.

One day, a nurse friend noticed her swollen ankle and asked if it hurt. Stormy replied that it did, and her friend validated her pain, affirming finally that it was in fact not normal. She recommended that Stormy see a podiatrist, who she said had recently treated her husband. Stormy saw this doctor and learned that she had been walking around with three tears in her tendon for three years!

After Collin started going to camp, Stormy began volunteering on a leadership team in the Georgia bleeding disorder community and at camp. She said she enjoyed working with the girls and remembered telling them to take care of themselves and learn to infuse. One of the girls asked her if she had ever been tested, and Stormy replied that she was a carrier. This question spurred Stormy to see a private hematologist at Emory University Hospital, who told her that her levels were around 42. When Stormy said she thought this meant she had hemophilia, the doctor said they didn’t know. Stormy replied that she would take care of it and called the Hemophilia Treatment Center (HTC), where she was finally diagnosed with mild hemophilia. She remembered that for the first time at the HTC they did not brush her off by saying she was a carrier and felt excited that she was finally being taken seriously.

But that excitement would soon turn to frustration and hurt as the doctors refused to prescribe a factor for her to have on hand when she needed it. “I said, ‘Look, y’all recommend that my son have some on hand. I need some on hand just in case, too.’ When something would happen to me that I knew I would infuse my son for, I would call them and they would say, ‘It’s not traumatic. You don’t need to worry about it.’”

One day, Stormy suffered a bad ankle twist. She was infused with medication by the doctor and noticed that her hip and neck felt better as well. Stormy called her doctor to ask if she could try infusing a few more times to see if it would continue to help her. However, the doctor dismissed her by saying, “It’s the placebo effect. There’s no reason other parts of you should feel better.” Stormy recalls this moment with frustration. “That really upset me! I said, ‘Don’t tell me it’s the placebo effect! If it feels better, it feels better. I know that for a fact!”

Stormy’s encounter with the dismissive doctor motivated her to seek a second opinion. She asked to see a different doctor, who told her that her symptoms were due to aging and likely arthritis, and advised her against infusing. Stormy challenged this diagnosis, pointing out that the infusions seemed to help her pain. In a conversation with an HTC nurse, Stormy asked if it was possible that she was having microbleeds in her hip. The nurse responded that microbleeds typically only occur after an injury, to which Stormy replied, “Well, I’ve had two babies. That was pretty traumatic on my hips!” Stormy eventually started infusing on her own and letting the doctors know afterwards. She felt that she knew her body better than they did.

After a couple of surgeries, for which Stormy was allowed to infuse, she found her third doctor. “I was really excited, because she agreed to let me start doing prophy before I went hiking or did stuff I knew aggravated my hip or ankle.” But once again, Stormy’s excitement was short-lived as the prophy was never prescribed. Stormy called and was told by the nurse, “Well, your level was 60 this time. She’s not giving you factor.” Stormy challenged the nurse, “So last year, I had a genetic condition, but this year I don’t?” “Well, your levels weren’t high enough. You shouldn’t be having any bleeding.” “But I am!” Stormy persisted. “I know the difference.” The lack of respect Stormy was feeling was creating a mounting sense of indignation. She started calling private doctors until she found one who would see her. It is a sad commentary on the state of women’s health care at the institutions which specialize in bleeding disorders, but Stormy has left the HTC and is now being treated by a private doctor. “I realize that this doctor probably doesn’t know enough about hemophilia, but I do, and I feel confident that, as long as he’ll give me factor, I can take care of myself. I’m on prophy now, and it’s amazing!”

After a couple of surgeries, for which Stormy was allowed to infuse, she found her third doctor. She was excited to work with this doctor because they agreed to let her start prophylactic treatment before engaging in activities that could potentially exacerbate her hip or ankle pain. However, the prophy was never prescribed. When Stormy called to inquire about this, the nurse told her that her factor levels were not high enough. Stormy challenged this, arguing that she was still experiencing bleeding despite having normal levels.

Frustrated by the lack of respect and support she received at the HTC, Stormy started calling private doctors until she found one who would see her. It is a sad commentary on the state of women’s health care at the institutions which specialize in bleeding disorders. “I realize that this doctor probably doesn’t know enough about hemophilia, but I do, and I feel confident that, as long as he’ll give me factor, I can take care of myself. I’m on prophy now, and it’s amazing!”

Stormy’s mission is to raise awareness about the lack of treatment that women with bleeding disorders often receive simply because they are not male. This incongruity is highlighted by her experience volunteering at camp, where pediatric doctors would examine her and immediately recommend infusion if she twisted her ankle. In contrast, her adult doctors at the HTC would not allow her to infuse, even though it had proven effective in the past. Stormy believes that women with bleeding disorders deserve the same level of care and respect as men.

Stormy recently checked in with the HTC during one of her son’s visits to let them know about her progress on prophylactic treatment. The doctor asked her, “I hear you’re on prophy now, so why are you here? What do you want?” Stormy replied, “The same comprehensive care that my son gets. I think I deserve that too.” The doctor responded, “Well, I can tell you right now that no ‘milds’ get prophy from this office. So if you have a doctor doing that for you, I don’t know why you’re here.” Stormy tried to engage the doctor in further discussion, but he cut her off, saying that he would only prescribe PRN treatment and not prophylactic treatment. Stormy decided that there was no longer any need for her to continue seeing this doctor, and she stood up to leave. She pointed out that her son, who is also a “mild,” was receiving prophylactic treatment and had never been denied the ability to infuse. She made it clear that she would no longer be seeking care from this office.

This recent exchange with the dismissive doctor took place only a week after a leading hematologist had encouraged Stormy by telling her that more hematologists are showing an interest in female bleeders and educating themselves about the topic. The hematologist had not anticipated that Stormy would have trouble getting the necessary prescription from her local HTC. Stormy described the experience as a “gut punch” and said that it made her feel like she did not matter as much as a man.

Stormy believes that doctors should be more open to the idea of the placebo effect. “If it is the placebo effect - so what? It’s not their insurance. They aren’t paying a dime for it. In fact, they’re making money off of me,” she says. She understands that doctors are concerned about the increased risk of clotting as women get older, but she points out that women in labor often have factor levels that rise to 200-250 without experiencing clotting. She believes that even at 100% levels, women should be okay.

Stormy has also sought the opinion of a well-respected former hematologist who shared her expertise with her. The doctor acknowledged that older men often report feeling better all over after infusing, and that the medical community does not fully understand all the ways in which factor affects the body. Stormy concludes that it is possible that factor is helping more than we know.

Stormy’s experiences echo those of many other women in the community. She explains that women with bleeding disorders often feel like they are getting nowhere with their doctors, who often dismiss their symptoms as being all in their heads or tell them to exercise more. Many women eventually stop seeking treatment because they are tired of feeling like they are not being taken seriously. Stormy has been aware that her own joint problems would only get worse without proper treatment, and she has been outraged by the lack of support she has received from the medical community.

As she has become more involved in advocating for female bleeders, Stormy has become increasingly grateful for the men who fought for better care for people with bleeding disorders. Because of their efforts, her son is receiving better treatment. She is determined to continue advocating for women and girls with bleeding disorders, even if it means enduring difficulties herself. She participates in every committee she can and speaks up about the gaps and shortcomings she sees in the existing support programs for women. Stormy wants national program leaders to understand that, despite their claims of supporting women, many women walk away from these programs feeling disappointed and unsupported.

Stormy knows that advocating for better care for women with bleeding disorders is not easy, but she believes that it is necessary in order to bring about change. She is motivated by her own struggles and her desire to prevent others from experiencing the same pain and frustration. Stormy has started using the hashtag #morethanaperiod to call attention to the fact that doctors often only want to talk to women about their menstrual periods, even though many women with bleeding disorders have had hysterectomies and no longer have periods. She believes that doctors should focus more on treating the symptoms of bleeding disorders, rather than just discussing factor levels.

Women in the community often feel hopeful when they hear about doctors who support prophylactic treatment for female bleeders, only to be disappointed when their own doctors refuse to prescribe it. Some women are even willing to fly across the country to get the care they need. Stormy finds it unacceptable that women with bleeding disorders have to go to such lengths to get the treatment they deserve. She points out that every state has a treatment center, and there is no good reason why women should have to go without care. She shares stories of women who are so afraid of bleeding to death that they take their son’s factor in hospital parking lots before surgeries. Stormy believes that it is time for the medical community to take the needs of women with bleeding disorders seriously.

Stormy became aware of The Coalition for Hemophilia B, when Collin was around 15. “As a woman, just being able to know that there are people who believe us, who listen, who support us, who give us opportunities to get involved and to be heard is life-changing.” Stormy says. “I look at myself as this small, country girl. I never in a million years dreamed that I’d be standing on a stage, giving a presentation and an award to a doctor!” She is referring to last March’s Eternal Spirit Award, which she was honored to present to Dr. Sedonia at the Coalition’s annual dinner. Stormy is determined to help other women with bleeding disorders and is willing to do whatever it takes, even if it means facing her fears.