Von Willebrand disease

Hi @ashleygt, Welcome to Mayo Clinic Connect. Aw, I’m so excited for both you and this child you’re bringing into your family. It’s wonderful to see such a positive story.

Von Willedbrand Disease is a blood clotting disorder that’s inherited. It’s managed with medication and can be more problematic if female due blood loss from their menstrual cycle. Being a male that is removed from the equation.
I found information on the Mayo Clinic Website regarding Von Willdebrand Disease and another from Cleveland Clinic. I’ve posted those sites below. They both describe diagnosis and treatment for this blood disorder. The most common treatment to help counteract the condition is using specific hormones to help balanced the Von Willdebrand hormone in the body.
https://www.mayoclinic.org/diseases-conditions/von-willebrand-disease/symptoms-causes/syc-20354978
https://my.clevelandclinic.org/health/diseases/17709-von-willebrand-disease
We do have a few discussions in our Connect forum regarding this condition but they are also correlating with other bleeding disorders. Some are directly related to VWD and some are for platelet conditions. I wasn’t sure which were relevant and didn’t want to overload you with information that might not be pertinent to your child’s situation. So I felt these two sites were a good place to start.
Most people seem to discover they have this condition later in their lives after having spend many years with bleeding issues. So to know early on can be a real benefit for starting treatment.
Best wishes on your fostering and hope it leads to an adoption for you!
The best person to discuss this with is a hematologist. They specialize in blood disorders. Have you spoken with a hematologist yet?

Thank you. As of right now, all we know is that he has it. He's 13. So this will be very helpful. The other forums may help more once we have more specifics. Thanks again, we appreciate all the help

@ashleygt This is great news for one young man. He knows now that he has Von Willebrand, and that it can be dealt with. I did not know that I have it until questions arose from an exome. It goes alone with my ABO Blood type and platelet issues. But I have had several surgeries for various cancers, and bleeding has been a problem for most of them. I am trying to get a whole genome analysis, but my PCP is a Samarita PA and refuses to order it, as the rules of Samaritan require. Other docs would, of course, but are barred from issuing the order. He says it is too complicated for him. Anyway, I am 82 years old, and have had many VWD and melanoma problems which could have been avoided had I known about these matters many years ago. And I would have spent several million dollars less on medical had I known what was going on. Anyway, on behalf of a lot of VWD folks out there, thanks for your care for your new son. oldkarl

Hi Ashley, I'd like to add my welcome. Fellow members @stephchurch, @nanashirley, @cece1112, and @pianopain12 have experience with Von Willebrand disease. They may be able share some insight in what to expect when caring for your an adolescent with Von Willebrand disease.

When do you get to meet your new son?

I have ET, CAL-R and acquired Von Willebrand Disease (different from VWD) and looking for anyone with similar diagnosis'