This article tells a story about Aelia, and how she became a "stronger person" after being diagnosed with a bleeding disorder:
"I am Aelia and my story started back in 2019 when after immensely heavy periods, my hemoglobin dropped to 4. I was transfused with blood and my hematologist suspected Von Willebrand Disease but couldn't yet give a diagnosis."
"Then after running the tests a few times, I was diagnosed with Von Willebrand Disease Type 1. With OCPs, everything was in control until after a year when the same thing happened. I was given lots of medications to control my periods."
There are three types of von Willebrand:
Type 1: The most common and mildest type, where the patient has lower-than-normal levels of von Willebrand factor, and sometimes factor VIII.
Type 2: (with subtypes being 2A, 2B, 2M, and 2N): A patient’s body is able to make normal amounts of the von Willebrand factor but it does not work the way it should.
● Subtype 2A - The level of the von Willebrand factor is decreased. The ability of platelets to clump together is also reduced.
● Subtype 2B - The von Willebrand factor does not work but the ability of platelets to clump together is actually increased.
● Subtype 2M - Von Willebrand factor levels are reduced and the interaction of the factor with the platelets or connecting the tissue is decreased.
● Subtype 2N - The binding of the von Willebrand factor to factor VIII (8) is significantly reduced.
Type 3: The most severe form of von Willebrand a patient can have, where they have very little or no von Willebrand factor and low levels of factor VIII.
Also Read - What Is Von Willebrand Disease?
"Sometime later I started bleeding from other places such as my nose and gums and my new hematologist wasn't satisfied with the diagnosis hence ran some platelet tests which yielded abnormalities."
"The tests required to make a complete diagnosis were unavailable in my country hence I traveled abroad and thankfully got answers! I have Von Willebrand Disease Type 1 along with an unidentified platelet disorder. Right now I am experimenting with different medications to see what works best for me."
"The journey has been tough but I am forever grateful for what I have gained. Not only has God given me the most wonderful healthcare team, but also I work with pediatric oncology/hematology patients in different capacities. My family and friends have been a pillar of support for me during some of my hardest times and I have become a stronger person."
Want to learn more about bleeding disorders? Sign up for our newsletter here! SIGN UP
Commenti