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Von Willebrand Disease (VWD) - Online Support Group

Cathy wants to hear about people's experience with Demopressin

#1

@Cathy

Hello there Cathy and welcome to Living With VWD. I’m sorry to hear about the difficulty that your daughter has been dealing with - have things become more more manageable since she began Desmopressin?

I think you’ll notice that a lot of our fellow members have also originally joined the community and behalf of a female member - often a younger female as it was with you. So your daughter is very lucky to have such a a mother who takes the initiative to become as informed on VWD as possible.

You can use the Search Icon (top right corner of red bar) to look through tons of previous discussions on particular topics of interest that you may have. For example, here are the results that come up from searching “Birth”, in case you were interested in hearing about other peoples’ experiences with birth control:

https://www.livingwithvwd.org/search?q=birth

Anyway, I hope you enjoy your time around here and become one of our active members going forward. So please feel free to reply to discussions or create your own topics! And also don’t hesitate to contact me with any questions or concerns =)

#2

Thank you so much. I do have some questions regarding Desmopressin? I have researched it and I’m very worried about the side affects of it and wanted to know if anyone has experienced them. If they have, which side affects and how often were they taking the Desmopressin? I read that you can suffer seizures or fluid intoxi

#3

Hi @Cathy ,

These were the search results that came up after searching for Desmopressin: https://www.livingwithvwd.org/search?q=desmopressin

Feel free to look through those, but from the quick browse I took, it seems like this topic was most relevant to people talking about the side effects: Has anyone had a reaction to the nasal spray desmopressin?

That particular discussion is a few year old however - so hopefully it help but I will also change the name of this topic incase any other members want to chime in on their experiences with Desmopression!