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Von Willebrand Disease and the Female Experience

by Alexandra Fuhs


Hi everyone! To end our Cardiovascular series, here is our feature article on Von Willebrand disease, a genetic condition that affects 1% of the population. Happy Reading!

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Von Willebrand disease is a lifelong genetic condition characterized by a lack of blood clotting. Those affected have a decreased amount of Von Willebrand factor, a protein that helps blood clot. Faulty or low amounts of these proteins result in platelets being unable to stick together. The disease is found in three levels of severity (Type I, II, and III) which determine the amount of uncontrolled bleeding a person may experience. While Von Willebrand disease is the most common type of bleeding disorder in the U.S., it only affects about 1% of the population, so those unaffected are typically unaware of the struggles that patients face. Many patients share their stories to spread awareness, and this article highlights multiple women who deal with the disease and their determination to live a normal life and educate others about the condition.



Kerri:

Kerri was diagnosed with Von Willebrand disease as a baby when her parents noticed unusual bruising. After further testing, she was diagnosed with type III, the rarest and most severe form of Von Willebrand disease. In addition, genetic testing confirmed her parents and sisters to be carriers of this dangerous disease. Consequently, Kerri led a protected childhood, always wearing a helmet and knee pads, and not attending day care as a toddler. She learned to self-advocate at doctor appointments and give herself infusions. When she began menstruating in high school, she dealt with severe bleeding — common for women with Von Willebrand’s, and had to work with different medications to get her bleeding under control.

Commenting on her disease, Kerri says, “I was very fortunate to be diagnosed so early. I became a nurse because of my own medical history and because I wanted to provide the same compassionate care I received growing up from my nurses to other people.”



Kacie and Angie:

Kacie was diagnosed as a child after biting her tongue too hard, which resulted in uncontrollable bleeding. As a teen, Kacie often felt embarrassed about her condition due to the limitations it placed on her, such as a severe period that impacted her education and ability to play sports. Her mother, Angie, also suffers from the disease and dealt with unexplained bleeding at the dentist as a child and serious menstrual bleeding. Both feel strongly about education, with Angie saying “How we found out is so different, we’re each having different symptoms, but it ended up being the same thing. So I think that’s why it’s so important to be educated, and for the doctors to know more about it, because you can’t have one symptom and assume that it’s one diagnosis.”


Lisa:

Regardless of their condition, many women are able to continue living a normal life by taking proper precautions and self-advocating. Despite having Von Willebrand’s, Lisa continues to excel in sports. Throughout high school and college she competed in archery, karate, and weightlifting competitions while managing her condition. It took eleven years for her to be diagnosed after a near-fatal tonsillectomy, but she was grateful for the diagnosis because the “hard part was over, now it was how to adapt [her] life accordingly.”



Treatments:

Unfortunately, there is still no cure for Von Willebrand disease. Treatment depends on the severity of the condition and ranges from infusions to sealants placed over cuts. An injection called Desmopressin is often used as the first treatment to stimulate a patient’s body to release more Von Willebrand factor, and oral contraceptives may be prescribed to female patients to control bleeding during periods.



Von Willebrand disease is a lifelong condition. For most people, with proper treatment and necessary precautions the disease does not interfere with them living an active life, though women with Von Willebrand disease often need to take extra precautions to ensure that heavy menstrual bleeding doesn’t lead to further issues. Organizations such as the National Hemophilia Foundation and the Iron Disorders Institute provide support and resources to those afflicted with a blood disorder, and though there is significant progress that needs to be made in treatment funding and Von Willebrand education, one group that received a grant for Von Willebrand genetic testing is the Versiti Blood Research Institute — a step that will benefit sufferers of the disease and will improve the diagnostic process.

------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------Thanks for reading the last article in our Cardiovascular series! We hope you learned about this rare condition and were able to gain a deeper understanding of what it is like to live with Von Willebrand's disease.


If you enjoyed reading this article, go check out our Cardiovascular Diseases article by Natalie Samara!


See you later,

Alexandra and the Writing Committee :)



References:

  1. Hemophilia Federation of America. “Living Fit with Von Willebrand Disease”, 13 February 2015.

  1. Factor My Way. “Patient Story: Kerri Borgese”. Patients Like Me.

  1. YouTube, CDC. “Women and Bleeding Disorders: Living with Von Willebrand Disease”, 5 May 2014.

  1. Mayo Clinic. “Von Willebrand Disease”, 26 October 2021.




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