Jo’s Story: Receiving a Late Diagnosis of von Willebrand Disease

Jo Traunter was told that she was “a bleeder” throughout her life, whether it was by family, doctors, or others. She earned this title after living through decades of heavy periods, prolonged bleeding, and easy bruising. In fact, it was not until she was 37 that she received the correct diagnosis of von Willebrand disease (VWD).

Jo’s Story

Since childhood, Jo has been an “easy bleeder.” She dealt with heavy periods that typically lasted ten days, uncontrollable bleeding after a cut, and very easy bruising. Now, she wants to let others know that heavy periods may not be something to dismiss; they could be a sign of something deeper.

She recalls the time that she broke her arm, and the bruising nearly blackened her arm and persisted for two days. The doctors and nurses showed concern at the hospital, and after pricking her finger announced that she had “prolonged bleeding,” and that was the end of that.

Jo continued to experience symptoms for the next couple of decades, with severe symptoms during the births of her first two children. Finally, for her third pregnancy, doctors finally came to see that something more was wrong. This happened when one doctor who assisted with her previous pregnancy referred her to a hematologist.

It was there, at age 37, that she was finally diagnosed with VWD. With this diagnosis, she could work with doctors to prepare for her third birth. This plan included her staying in the hospital past the twentieth week of her pregnancy.

Despite all of the preparation, Jo went into labor two months early, meaning everyone had to scramble. While doctors were ready with human clotting protein, it wasn’t enough to stop the bleeding. Jo ended up needing an emergency hysterectomy, but luckily she and her baby were both happy and healthy afterward.

Now, Jo is aware that she has VWD and can treat it accordingly. Her oldest and youngest children have also been diagnosed. One of her passions is raising awareness for this disease and pushing others to realize that heavy periods may be a warning sign. In fact, she is now a trustee for the Haemophilia Society, which has actually released a new tool for people to see if their heavy periods are normal.

About VWD

VWD is a bleeding disorder that occurs when the protein von Willebrand factor is missing or doesn’t function normally. This impacts the blood’s ability to clot, leading to symptoms like:

  • Easy and frequent bruising
  • Frequent, long-lasting, difficult-to-stop nosebleeds
  • Bleeding from the gums
  • Heavy and/or long periods
  • Blood in the stool or urine
  • Excessive and long-lasting bleeding from a minor injury or procedure

This disorder is caused by a mutated VWF gene, which can be inherited or a sporadic mutation. In the cases where it is passed down by parents, it is typically done so in an autosomal dominant pattern. In rare cases, it is passed down in an autosomal recessive pattern.

Read more about Jo’s story here.

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