I haven’t been officially diagnosed with VWD, but I’m fairly certain I have it. My sister has been officially diagnosed, along with her daughter; furthermore, I nearly died on 3 separate occasions (surgeries when I was younger), as each time the surgeons nearly gave up trying to stop the bleeding. I was also administered some type of bleeding test while in elementary school: they cut me with a small razor and waited to see how long it took for the bleeding to stop - it never did. I was rushed to the hospital an hour or two later, but they did not discover the issue at that time. (This was in 1978. I am now 49 years of age.)
I do not have health insurance. I have paid out-of-pocket for the von Willebrand blood panel; I went to my primary care physician (internal medicine specialist) who ordered the test (sent to the Mayo Clinic). It was over $1000. It came back negative.
However, since I found this site, I have learned that a number of members of this forum who were ultimately positively tested for the disease had initial testing that was negative.
Quick question to begin my inquiries (other questions will follow in the coming days):
Does the disease have anything to do with the prevention of normal healing processes?
Meaning, all of my life I have been a very slow healer. For instance, I am presently recovering from muscle tears (pelvis) experienced in 2012, tears which have not fully healed 6 years later. Other instances of slow healing in my life have been numerous.
The latest treatment I have utilized in association with these muscle tears is platelet rich plasma therapy (PRP therapy). I have had 3 rounds of this therapy over a period of a little less than a year. Thus far, they have been primarily unsuccessful. The pain specialist who has administered the PRP treatments is surprised with my lack of progress and believes that von Willebrand’s disease may play a role here. However, he has noted on multiple occasions that the medical literature simply doesn’t exist with regard to whether the disease has an impact on PRP therapy.
I have been tested on multiple occasions for diabetes. The test always came back negative. As of 18 months ago, my internal medicine specialist ran what she referred to as a “most comprehensive blood panel” to check for any anomalies - the cost was nearly $3000 - and absolutely everything came back normal.
Any information anyone may be able to provide with respect to whether there’s a connection between slow and/or incomplete healing and VWD would be most sincerely appreciated.