Journey to Awareness

by Laura -- Hustisford, WI USA

I guess I should have suspected something was not exactly right with the way my blood clotted. From the first period, at the age of 12, I suffered menorrhagia and had no idea that I had it. There was not any brown spotting before my first period. I would have very heavy and I would cramp really bad.

At the age of 20, I had a tumor removed from my neck that thankfully was benign. I also had the salivary gland removed on that entire right side of my neck. Immediately following my day surgery, I started to swell on that side of my neck. I was told this was normal and maybe it is. About a week later, a day before my stitches were to be removed, I woke up that very morning with my back feeling wet. I thought it was sweat. I was wrong. My nightgown was soaked in blood. I went to the bathroom, looked in the mirror and saw the blood dripping down my neck as though I were some vampire victim who had just been attacked. I remember my mom slapping me in the face saying "Laura! Laura! Answer me!" Her voice sounded like it had an echoing effect as though she were standing of in the distance of some tunnel. 

In October 1996, I was hospitalized with ITP (Ideopathic Thrombocytopenia Purpura). I had major bruises that grew in size fairly rapidly. I had tiny purple pinpoint hemorrhages called "peticae purpura" and my platelets were 12,000ppm. Normal platelets should be around 99,000-140,000, so I knew I was way off the mark. This problem was treated with Prednisone and went away, never to return. I did continue to bleed heavily monthly.

My sister had her fourth child in 2007 and hemorrhaged 2 weeks following. She lost 7 units of blood. She was diagnosed months later as having von Willebrand Disease. My sister-in-law, who is an LPN called me up and urged me to go get tested for it and that about half of the four of us could have it and half may not have it at all.

I decided to go into our local clinic and not only have myself tested, but to also have my two beautiful boys get tested as well. My younger son had major nosebleeds since he was around 4-years-old. He's always bruised as easily as I had in the past. He continues to bruise and has recently had joint swelling in the left knee. His von Willebrand Factor had shown to be below normal and continues to be pretty consistent. He has since been infused with DDAVP and has responded very well to treatment.

I will continue to be tested for vWD and some clotting factor deficiency. Whatever is happening or has been happening to me is still a mystery that is waiting to be solved. My reason for publishing my story is to hopefully make other people aware about bleeding disorders. I am hoping that if others suspect something is not quite right with them, that they consider being tested. VWD takes a longer time to diagnose in women than it does men.

I am hoping that my message and the messages of other sufferers will end other peoples suffering. Knowledge is power! Take control of your situation and take back your life.

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Most courageous story sharing how she has used her personal bleeding issues to help others

Laura shares details of bleeding issues spanning many years that included: menorrhagia, post surgical hemorrhage, hospitalization due to ITP (Ideopathic Thrombocytopenia Purpura), and a plummeting platelet count. She also shared that her sister and son were both diagnosed with vWD. But, Laura still has not been diagnosed. Her desire is share her extraordinary story to set an example for others who may have bleeding issues, and to graciously ask them to consider being tested.