Writing a hemophiliac character

Disclaimer: Though I’ve written several hemophiliac characters, starting in 1995, all my knowledge of the condition is based on secondhand research. If you have firsthand experience with the condition, please correct me if I’ve made any inadvertent mistakes!

To date, I’ve created two hemophiliac characters, Philip and Malvina Green (the first and third children of my feisty character Kit), and the hero of my alternative history, Aleksey Romanov, obviously also had the disease. Three of Philip’s future grandsons, his firstborn Karyn’s children, will also have the disease. Here are some things to keep in mind if you’re thinking about writing a hemophiliac character:

1. First things first, inheritance works in a certain way. You can’t have your character inheriting hemophilia through, say, a paternal grandfather. Only women carry the gene. They have a normal X chromosome and a hemophiliac X chromosome. This is why usually only men are hemophiliacs, because if they get the wrong X chromosome from the mother, they don’t have another X chromosome to cancel it out. Women can get hemophilia, but it’s pretty rare. When a male hemophiliac has children with a non-carrier woman, all the girls will be automatic carriers, but the boys can’t have hemophilia themselves. However, just because a woman is a carrier doesn’t mean all her daughters will be automatic carriers, nor does it mean all her sons will have hemophilia.

2. This isn’t a disease which can be detected prenatally. It generally becomes apparent during babyhood, not immediately after birth. Often, parents realize something isn’t right when their son is learning to crawl and getting mysterious bruises on his joints and limbs.

3. Hemophilia A is the less serious form of the disease, and Hemophilia B is the more severe form. Hemophilia B has also had the nickname Christmas Disease since 1952. Aleksey was found to have Hemophilia B after the analysis of his remains, which were finally found in 2007.

4. Everyone is different, but often attacks will be more frequent and/or severe in childhood. Children don’t have the maturity and self-awareness to understand what it means to have a disease like this, nor how to avoid potential injuries. Aleksey had a lot of attacks as a boy, the most famous and severe suffered in 1912, but he got a lot stronger and healthier after he turned twelve. He wasn’t having all these attacks because he was clumsy and careless, but because he was just trying to be a normal boy. He wasn’t some wilting lily staying inside reading and drawing all day. His final two serious injuries were suffered in captivity, and I really don’t agree with people who think he was tempting fate and getting too sure of himself. If he’d been in normal circumstances, would he really have gotten the idea to ride a sled down a staircase?

5. Historically, the life expectancy of a hemophiliac wasn’t very long, but there were always exceptions. A number of the hemophiliacs from Europe’s royal houses lived into adulthood; the longest-lived was Prince Waldemar of Prussia, who died at 56 in May 1945. He might’ve lived even longer, had a hemophilia attack not coincided with the end of the war, the necessity of fleeing from the approaching Red Army, and the American forces’ diverting of all medical supplies to treat survivors of a nearby concentration-camp. As abovementioned, the hemophiliacs who died in childhood, like Prince Friedrich (Frittie) of Hesse and by Rhine, and Prince Waldemar’s little brother Heinrich, just didn’t realize how dangerous it was to do things like play by an open window or climb onto a table.

6. Don’t paint your character as some accident-prone dunce who bleeds from every little thing. A lot of people seem to have this false perception of the disease as constant, uncontrollable bleeding, from things as minor as a handshake or bumping an elbow. This disease is unpredictable. A child could appear to be fine after a nasty fall, only to develop a subcutaneous hemorrhage the next day, or slam his fingers in a door without incident.

7. Prior to modern hemoglobin drugs and blood transfusions, there really was nothing to be done except wait for time to heal. There were also things like cold compresses, elevating the arm or leg, and having the affected limb immobilized in a splint. After long periods of bed rest, an electroshock machine could be applied to the limbs and joints to prevent atrophying.

8. Sometimes an attack isn’t a cut that bleeds for days, but internal bleeding. A lot of Aleksey’s injuries were subcutaneous hemorrhages, bleeding under the skin that swelled up and took as long as months to be reabsorbed. The injury in 1912 was particularly life-threatening because it was a hemorrhage in the groin and stomach.

9. Can this be used for a storyline beyond a sickly child? My Philip is born in 1958, and has a lot of injuries and hospital stays growing up. His mother, Kit, hires a live-in hematologist named Zed, a very interesting character who’s obsessed with blood diseases and constantly writing papers about famous hemophiliacs. Philip unsurprisingly becomes stronger and healthier as he gets older, but after a blood transfusion in 1983, town psychopath Urma Smart tricks him into thinking he got AIDS. Later on, she phonies up bloodwork claiming Philip’s wife Vanilla got AIDS too, and then their fifth child Livia. This goes on for almost two years, until Philip and Vanilla discover they were tricked and lied to by a monster.

10. Hemophilia is NOT a disease caused by inbreeding, nor is it only found in European royalty. Plenty of ordinary people, without a drop of royal blood, have the disease. The disease was only kept alive and passed along among so many royal houses because these people were all related to one another several times over. There wasn’t any fresh blood, so to speak, coming in to help to cancel out the hemophilia gene.

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13 comments on “Writing a hemophiliac character

  1. Fascinating stuff. Your tips are really good. Have a happy new year! 🙂

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  2. Good point about internal bleeding. I wouldn’t have thought of that.

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  3. stephie5741 says:

    Very enlightening. What drew you to write about hemophilia?

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    • Carrie-Anne says:

      I was inspired to make Philip and his second sister Malvina hemophiliacs after I became interested in Russia’s last Imperial Family. Back in 1995, I didn’t know so much about the disease beyond the surface level, but over time, I learnt a lot more. I’m the type who loves watching documentaries and TV shows about diseases and odd medical conditions.

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  4. Chrys Fey says:

    I don’t think I’ll write about a hemophiliac character, but if I do this post will come in handy. I learned a lot already!

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  5. kellysteel says:

    Fascinating stuff. Your tips are really good. Have a happy new year!

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  6. Kate Warren says:

    Such a terrible disease to have, especially back a ways in history. I’d like to say that actually, Aleksey might still have had the idea to ride a sled down the stairs regardless of circumstances. I know my sisters and I used to do that with mattresses, and we weren’t confined indoors. He was a normal boy in many respects.

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  7. Petra Steele says:

    This is great information! I’m an LPN nurse who has taken a lot of science courses over time. While I write horror and sci-fi and thus have a tendency to play havoc with reality, I do like to stick to certain scientific truths behind my bending thereof. Great job!
    Thank you for visiting me at amodernvampire.blogspot.com

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  8. Interesting facts. I used to have the notion that they were clumsy people who bled all over the place. I think it was because of the way one or two teachers described it, and then my imagination went into overdrive.

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  9. Agatha P says:

    Wouldn’t “being interrelated several times over” be the same thing as in-breeding?

    Because of modern medicine, people who have essentially the “opposite” of hemophilia, that is, a platelet disorder, often get the same symptoms as those with hemophilia. This is because of the necessity of life-long blood thinners to prevent the patient from having deadly blood clots, assuming they live past the first or second incident, when most people discover they have this hereditary disorder.

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  10. […] For more detailed information, please see my post on Writing a hemophiliac character. […]

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  11. Heather says:

    Haemophilia a is not less serious than Haemophilia b, they are exactly the same, it’s just the missing clotting factor is different, and b is rarer than a. The seriousness of the effects are ruled by the amount of clotting factors missing, a serious haemophiliac has less than 1% clotting factor, a moderate one between 1% and 5% and a mild one between 5% and 40%, over 40% and blood will clot normally. All affected members of a family will have the same level of severity.

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  12. Maria says:

    Just a few inaccuracies…

    Hemophilia A is equally severe as Hemophilia B. It all depends on the level of clotting factor actually existing in the patient. It is categorized as Mild, Moderate or Severe. A Severe Hemophilia A patients is equal to a Severe Hemophilia B patient. Often, Hemophilia A can actually be considered worse since those patients have a much higher rate of developing Inhibitors to the clotting factor used to help control bleeding. Hemophilia A is more common affecting 85% of hemophiliacs, but it is not less severe as suggested in your notes.

    Additional, times of active bleeding are referred to as bleeding “episodes,” not “attacks.” Attacks suggest these episodes come on instantly (usually only in the case of some type of trauma). Most bleeding episodes (also referred to simply as “bleeds”) tend to develop over a few hours or days.

    Platelet disorders are not the “opposite” of hemophilia. It is a different disorder.

    If the woman knows she is a carrier of hemophilia, it can be determined prenatally. After birth, it is often discovered after the circumcision when the wound will not heal and continues to bleed, or when the baby becomes more active and shows bruises and swelling, sometimes mistaken as child abuse.

    Most bleeding episodes are actually internal, especially within the muscles and joints. A common side effect of having hemophilia is chronic arthritis caused from the internal bleeding. External bleeds, such as a paper cut or shaving cut, are annoying because they tend to ooze a little longer than typical, but don’t cause life threatening trouble.

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