Shelly Mountain has traced her family history and shares how von Willebrand disease (VWD) has impacted six generations very differently since her great-great grandmother’s era.

Medical treatment was difficult back when her great-great grandmother began experiencing heavy bleeding in the mid 1800’s. Each generation had family members who were known as “bleeders” and there are tales of miscarriages and near death experiences due to excessive bleeding for everything from a tooth extraction to a stomach ulcer.

Female ancestors of Shelly’s had many children. She shares a story of one family member who had 11 children and hemorrhaged after each birth causing her to go into shock due to the extreme loss of blood.

Being a “bleeder” presented serious medical complications for her ancestors.

Within the past century, many VWD patients required blood transfusions due to significant blood loss. This has presented its own set of concerns. Over the years, HIV and hepatitis were not screened in blood donations and people became infected after transfusions.

Shelly’s father was diagnosed with VWD. However, since men often have less severe symptoms, he was not formally diagnosed and Shelly was unaware of her family history.

She recalls her and her brother experiencing severe nose bleeds as children and experiencing a bleeding ulcer at the age of eight. She went on to experience long and heavy menstrual cycles all through adolescence. It wasn’t until she became pregnant that her doctor diagnosed her with VWD after she began heavy bleeding 16 weeks into her first pregnancy.

Once she was diagnosed, Shelly went on to have a second child with careful precautions being taken prior to delivery. Both of Shelly’s children have been diagnosed with VWD.

Read more about Shelly Mountain’s family history and the impact here.

What stories about VWD have you heard in your own family? Share below!