Being a carrier of hemophilia could have a vast impact on the health of a woman, as well as her academic, professional, and social life. It is normal to experience feelings of guilt. What to do in that case?
For Merly Barrera, who’s a carrier of hemophilia, a clinical psychologist, a specialist in child neurodevelopment, a Hematologic psychologist, an aspiring master’s in cognitive science, and an empowered carrier is that patient who has the tools to manage her condition and environment.
The first thing: break the myth
According to the psychologist, the fact that for years it has been believed that carriers do not have hemophilia or are asymptomatic. That has led to, for example, prolonged and heavy menstrual periods in women that can go unnoticed because it is seen as usual.
The specialist in Hematologic psychology emphasizes that some women live for years without knowing or without at least suspecting that they have symptoms. “When you come from a family in which the mother, the sister or the grandmother grew up with an abundant amount of bleeding or had postpartum complications, that normalizes it in the family, making patients not want to consult with doctors,” she clarifies.
As if that weren’t enough, to this is added the fact that many carriers meet with health professionals who do not know about this pathology. “Some still think that only men are those who are going to present symptoms. We are currently trying to ensure those female carriers are treated with dignity in the medical care system.”
Symptomatic carriers and women with hemophilia
To give clarity to the subject, Merly Barrera ensures that symptomatic carriers and women with hemophilia can:
- Present bruises and hematomas.
- Present prolonged hemorrhages after surgeries.
- Present severe hemorrhages after trauma.
- Greater probability of presenting postpartum hemorrhages and, consequently, to be subjected to a hysterectomy.
- Sporadically can be presented with hemarthrosis or muscular hemorrhages.
- Frequently have heavy and prolonged menstrual periods (menometrorrhagia) and are more likely to need iron supplements due to blood loss.
Dysmenorrhea and pain in the middle of the cycle
Women with coagulation disorders are more likely to suffer from pain during their menstrual period (dysmenorrhea). They could also experience slight internal bleeding during ovulation, which can cause abdominal and pelvic pain. This hemorrhage can be severe and life-threatening, particularly in carriers with a deficiency of coagulation factor. These situations may require urgent medical attention.
Hemophilia carriers run the risk of presenting hemorrhagic symptoms (heavy and irregular menstrual periods, fibroids, and polyps) more severe, and they may require treatment.
Subsequent hemorrhages / Surgeries / Traumatisms
It is the most common symptom experienced by women. This occurs in recurring medical interventions, such as dental extractions or tonsillectomies. Also, in postpartum surgery, there may be hemorrhaging.
Carriers with low levels of factor have a higher risk of heavy menstrual periods. Excessive bleeding can cause anemia due to low iron levels in the blood, which causes weakness and fatigue.
Other gynecological problems
Hemophilia carriers seem to present an increased risk of hemorrhages in simple cysts that become hemorrhagic ovarian cysts. These can cause a considerable amount of pain and may require urgent medical care.
GENETIC INHERITANCE IN WOMEN
- Carriers have 50% chance of transmitting the altered gene to each child. If it is a male, he will have a 50% chance of having hemophilia, and if it is a female, she will have 50% chance of also being a carrier.
- From a father with hemophilia: all of his daughters will be carriers, but none of his sons will be affected.
- In very few cases where the father has hemophilia, and the mother is a carrier, a daughter can inherit both altered copies of the gene. Here we would see the diagnosis of daughter being hemophilia, which is very different from being a symptomatic carrier (she can have the same clinical manifestation, but the difference is in the genetic composition of the chromosomes).
We differentiate two types of carriers:
Obliged carriers: when they are the father’s daughters who have been diagnosed with hemophilia.
Probable carriers: When there’s a medical history of hemophilia in their family.
FAMILY PLANNING AND PREGNANCY
Merly Barrera says that carriers should receive genetic counseling about the risks of having a child affected by a bleeding disorder. They should also consult with an obstetrician as soon as they suspect that they’re pregnant. “The obstetrician must work closely with the hemotherapy staff to provide the best possible care during pregnancy, delivery, and postpartum,” she emphasizes.
For the psychologist, before pregnancy, carriers need clear information about:
- The probabilities of transmitting the hemophilia gene to their child.
- The consequences of inheriting hemophilia, both for a boy and a girl.
- How hemophilia is managed, care available in the setting, and costs.
- How the pregnancy, delivery, and postpartum should be addressed to reduce the risks for both the mother and the baby.
- The options available for conception and prenatal diagnosis.
Facing the condition can lead to the stages of a duel
How difficult is it to handle the fact that I’m going to have a child with hemophilia or a daughter with the possibility of being a carrier?
According to the specialist in hematologic psychology, facing the condition is not an easy process because it can bring psychological and biological discomfort and lead to the stages of a duel, in this case, the loss of health and wellbeing. She explains:
Denial: When the diagnosis is received, phrases arise as “why me?” or “I cannot believe it yet.” Here there can even be a response of “nothing’s happening,” “everything is fine,” which leads to denial of diagnosis.
Wrath: It is the first emotional encounter after diagnosis and can even be instilled because carriers feel responsible for what they have and transmit. “If it isn’t well cared for and as psychologically healthy as possible, we will move on to the rest of the stages and the condition with this feeling of guilt,” says the psychologist.
Negotiation: Here, it is sought to reverse the situation of the diagnosis. “We’ll look for new treatments, the way they tell me that I will be fine,” says Barrera.
Depression: It is another encounter with emotions; there may be a feeling of nostalgia, sadness, and pain for having the condition and for transmitting it. “If it isn’t channeled well, it can hinder the process of managing our wellbeing and normalizing our condition.”
Acceptance: It is the healthiest part and involves accepting the change of life that will be had. “There is a loss of health, but it doesn’t mean that you will not achieve things. It is just a lifestyle change.”
At work and social activities
As we have already mentioned, and like any disease, being a carrier can bring with it an impact not only on health but in your social, academic, work, and professional life.
For Merly Barrera, in the case of carriers. It is said that having heavy bleeding and pain would be uncomfortable, for example, for being at work. “Not in all the professions can you ask for permission, managing your time for hygiene or take a pain killer. They are days where you will not want to go out, “says the psychologist.
She adds that this situation can have a psychological involvement and develop emotions such as anxiety, anguish, and fear. There can also be self-isolation from family and friends.
It affects sexuality and marriage.
According to Merly Barrera, shame could become present because the woman has to make known her situation with her significant other. “Aspects like I have to wait more weeks to have sex and be more careful with hygiene,” she points out.
Regarding the marriage, she emphasizes that it is not easy to assume that she is going to have a child with the condition because this is going to create additional needs: “they’re a child to whom I have to pay more attention.”
What to do?
The specialist in hematologic psychology concludes that if your situation has adequate support and advice, the feeling of guilt and other negative emotions that we spoke of can be reverted to positive behaviors.
“If as a carrier and a mother I have a focus of being an empowered patient, the fact of being well informed will allow me to manage and guarantee a better quality of life for my children and me. Thus, we reduce that feeling of frustration, “she says.
See this video interview on our YouTube channel. “Empowered carriers”: women and hemophilia. https://www.youtube.com/watch?v=RSlzp-lkohm&t=140s
Related topics to read.
- When hemophilia appears suddenly in a family without a medical history of hemophilia: https://fhlusa.org/when-hemophilia-appears-suddenly-in-a-family-without-a-medical-history-of-hemophilia/
- When does a menstrual period stop being normal?: https://fhlusa.org/women-and-their-bleeding/