von Willebrand Disease Community
VMD or other bleeding disorder
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WELCOME TO THE COMMUNITY: This Patient-To-Patient Community is for discussions relating to von Willebrand’s Disease (VWD), which is a bleeding disorder. It affects your blood's ability to clot.

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VMD or other bleeding disorder

First of all, forgive me for posting this in the VMD forum, but there doesn't appear to be a forum for other bleeding disorders.

Full discloser: I'm an author, specifically of LGBT romance. I am presently trying to research a book I want to write told from the point of view of a gay man living with a bleeding disorder, most likely not VMD but rather a moderate-to-severe case of hemophilia (I haven't yet determined which type specifically.) Being a romance, of course, specifically this book would be about his meeting a partner and becoming involved.

It is extremely important to me not to treat this subject lightly. I want to deal with it as fairly, accurately, and respectfully as possible. However, I'm having a bit of trouble doing detailed research because almost all information I can find on any form of search involving any variations of the words "hemophilia" and "gay" deals with HIV and the prevention of disease transmission. This is not the information I need.

I need to be able to relate the very mundane details of living with this condition, because this story is told in the first person from this character's POV. A lot of this I know can be found on general living with hemophilia resource sites, but perhaps not in the level of detail I need to be able to accurately and honestly convey the experience from the POV of someone living it. I need to know what things, both the everyday and the complicated -- really feel like for this character. What's he going to feel physically if he gets a bleed, what's he going to feel emotionally while he's infusing or treating a bleed, what's he going to need to convey to his partner as they begin their relationship?

What would his daily life be like? What things would he have to keep in mind relating to his condition every day that someone without this sort of condition wouldn't?

Can he, for instance, use a hot tub or steam room? If he can, what sort of limitations does he need to place upon himself doing so with regard to his condition? I know that body art is a bit more problematic for people with bleeding disorders. If he wanted a small tattoo, he could probably get one after infusing, but what if he wanted a very large, elaborate tattoo? Would he ever be able to do such a thing? I know he can't use aspirin or certain other pain relievers. Would he still be able to use Tylenol or is that out, too?

Then, of course, this book is a romance, so I will also need to convey information about his sexuality and challenges specific to his sexuality. I have been able to find some information (though not much) on women's sexuality and living with bleeding disorders, but almost none at all on the sexuality of gay men living with bleeding disorders. The few resource sites I've found dealing with issues regarding sexuality are very general, and again do not provide the sort of -- you'll forgive the use of the term -- intimate insight I need to accurately write about this stage in this character's life.

What complications might he face giving or receiving oral sex? Anal sex? What might happen if someone gets too rough? What if he wants a little pain with his sex? He probably couldn't do any deep-tissue impact play like flogging, but would be ever be able to, say, have a spanking or paddling? Have his nipples pinched or clamped? Be exposed to heat on his skin, like, say, hot wax? What would the outcome be if he tried it, either successfully or failing?

Any assistance you could give me would be greatly appreciated. If anyone living with this condition would like to begin a correspondence to perhaps field any other questions that might come up, I would also be happy to do that. Thank you very much.
2 Comments Post a Comment
Like you said you really need to be speaking to someone with Hemophilia rather than VWD - there are groups on facebook that might be happy to help.
However, as a person with vwd I can field a couple of the questions. Firstly to briefly explain, a person with vwd has the ability to clot but not the same as a non-effected person. Someone with hemophilia cannot clot without treatment.
As far as I am aware heat related things wouldnt be an issue, they're certainly not for me and I've never heard of them being so, I could be wrong.
I'm in the UK and we dont have Tylenol but if its just paracetamol based then its fine, people with coagulation issues in general cant have anti-inflammatories such as ibuprofen and aspirin as they can cause internal bleeding.
Major issues for you to look into would be joint bleeds, the ability to work (not all bosses will happily let you have weeks off sick at a time because you're nursing a bleed) nor is the range of jobs you can easily do on crutches/in a wheelchair etc as long as those for no-effected people. I'm not saying everyone with it has mobility issues but its something to consider.
I cant help much with the sex related stuff but if something is tried and is unsuccessful, going to their treatment center and explaining their "injury" may be eyebrow raising - although obviously they can often treat at home thats not always enough.
Anyway, like i said, you really need a hemo group but all the best with the research

Thank you so much for the information. I will try to look for those groups on facebook. Even this much information helps.
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