von Willebrands Disease

So what is this weird thing I have? VWD is an inherited bleeding disorder, which causes both a quantative or qualatative deficiency in von Willebrands factor, an essential blood factor for clotting. VWD is the most common inherited bleeding disorder of this kind, effecting an estimated 1-1.5% of the population, though Haemophilia is generally better known by many people. There are three types of VWD – 1, 2 & 3. Types 1 & 3 are quantative deficiencies, where the body does not naturally make enough VWF to function properly. Type 1, the mild diagnosis, ranges from anywhere between a very slight reduction in factor levels, where the person may not ever be diagnosed, or is only diagnosed after major surgery or a serious accident like a car accident, right through to a quite noticable deficet in factor, requiring daily medication and monitoring. Type 3 is severe, where the individual only makes 5% or less of ‘normal’ levels of VWF, and these individuals have symptoms more like those associated with severe haemophilia. Type 2 is a qualitative deficiency, where the factor levels tend to be normal, but the factor doesn’t work properly. Type 2 is further divided into 4 sub-types, each with their own specific issues. Bleeding disorders generally, including VWD have high rates of undiagnosis as the majority of those effected have type 1 or mild classifications that are so mild they never get diagnosed. So the estimated rates of patients at 1-1.5% of a population are exactly that – estimates. Diagnosed rates are much lower, and for VWD, despite it equalling effecting males and females, women tend to get diagnosed at a higher rate due to menstrual bleeds.

I have Type 1 VWD, but I fit somewhere closer to the mid-range of factor levels. My levels are low enough that I need daily medications, and daily assessment of my activities and any injuries, but not so low that I require regular blood or factor transfusions. Which puts me in a odd place, medically – knowing when to react, when to let things be, and which issues to make a fuss of, particularly when I need to go to the ER, can be confusing and very inconsistent. What is a problem one day isn’t necessarily an issue the next time that injury happens or bleed flares up.

My worst bleeds, by far, are my menstrual bleeds. Without medication, I simply cannot engage in society. I had my worst bleeds throughout highschool, which is a confusing and stressful enough time without the constant threat of haemmorhaging (hello, final exams! Who needs blood loss on top of that!). My periods, natively, are long (months long with no proper cessation of bloodloss), painful (to the point that I’ve developed a tolerance to OTC pain meds… oops), and heavy (the scary kind where you flood through multiple pads in an hour or so – thankfully my school skirt was navy!). I have had them under control for almost 10 years (after an initial period of drug testing after I was diagnosed) until recently when my body decided to no longer respond to the combination of meds I’d used for so long. I’m currently experimenting with new treatment options, and I’m hoping this first one turns out alright – I really don’t enjoy the med testing phase, its so unpredictable and its a bit scary not know exactly what is going to happen. The things my doctors and I look for in a good combination of meds is not only the ability to keep a period at bay and stop it when I am bleeding, but also reducing the severity of periods/pill withdrawal bleeds. I also have the fun complication of getting high blood pressure from the pill. Under usual circumstances, I’d be taken off the COCP, but seeing as though I need something to stop the bleeding, its hbp meds for me!

The other bleeds? Well yes, I get both injury based and unexplained nose bleeds, bruising, rectal bleeds and throat bleeds. Gastrointestinal tract bleeds (in your stomach and intestines), as well as joint and muscle bleeds are possible, but unlikely for me – they are more common in people with type 3.

I have lots of medications and methods for controlling these bleeding episodes, and I’ve been discovering a lot of non-medical options in recent years and months which I will undoubtedly bring up in coming posts.

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2 Responses to von Willebrands Disease

  1. Pingback: Resilience & Serendipity | MyMissingFactor

  2. Pingback: Intimacy, blood & sex – a unique perspective from a woman with a bleeding disorder | MyMissingFactor

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