Replies to This Discussion

ModeratorPermalink Reply by John on November 26, 2010 at 2:42am

I was diagosed with the congenital heart defect, Atrial Septal Defect (ASD - www.asdsurvivors.org), in December 2009. In simple terms, ASD is a hole between the atrium which never closed after I was born though often times does not get picked up until one gets to their 30s, 40s, has symptoms or has a stroke.
The combination of VWD (1% of the population) and ASD (4 out of every 100,000 newborn babies has it) or only 120 Americans having both conditions made closing the hole in my heart more challenging and required extensive due diligence across various countries. I opted for open heart surgery in May 2010 and made a full recovery and ran the NY City Marathon less than six months after open heart surgery.

My father has both VWD and Waldenstrom Macroglbulinem, very rare form of non-hodgkin's lymphoma.

• ▶ Reply

Permalink Reply by michelle lambert on February 18, 2011 at 9:13pm

i have epilepsy, and while researching the medication they put me on i found that the valpuric acid can lead to von willebrands disease. i know this doesn't hide it but it can make you already active vwd worse..

• ▶ Reply

Permalink Reply by Bluzdoctor on April 21, 2011 at 4:48pm

I have severe Type III vWD and chronic Hep C that has progressed to cirrhosis. Liver produces factor eight and some vWb factor. Liver scarring causes spleen to destroy platelets. I bleed much more often because of damage caused by the virus.

 

Can't take aspirin for the usual reasons, can't take Tylenol because of the liver disease, so painkilling is difficult. Meds to control esophageal varices masks hypoglycemia. More fun than you can shake a stick at (as my grandmother used to say).

• ▶ Reply

Permalink Reply by erin hurley on June 24, 2011 at 6:11am

I'm glad to hear from all of you. I've got VWD, uncontrolled and unnamed heart condition. 1 daughter has VWD, low factor VIII, ADD, dsylexia, digestion problems, wheezing, and a mood disorder. My other daughter has VWD and GERD. 1 son has a repaired AVM, VWD, repaired aneurysm, stroke, non-moving cranial ventricles, shunt, hydrocephaly, missing parts of his brain,vision loss,papilledema, and all the complications that go with it all. My hubby has VWD that he doesn't take care of. A father-in-law who has a pacemaker/defibilator and bleeds like a stuck pig but won't get tested for VWD. Fortunately for my sanity, I also have another son who just has VWD and his only other problem is that stimate doesn't do anything for him, knock on wood. Whoever thought that anyone would say thank god all he has is VWD? Ha ha.

• ▶ Reply

Permalink Reply by Arayah's Mommy on November 29, 2011 at 1:26am

My 2 yr old daughter has HLHS a very severe and rare heart condition. She has had 8 surgeries and they said she acquired VWD from the heart defect and all the surgeries, blood thinners, and transfusions. Arayah also has a multitude of other health problems that makes this even more serious for her.

• ▶ Reply

Permalink Reply by tassiebek on March 26, 2012 at 5:15am

I also have a genetic vascular condition Hereditary Hemorrhagic Telangiectasia, it causes nose bleeds, AVM's through various organs and regions throughout the body, I have had them in my stomach and bowel; also one on my liver.

As a hyperactive child who was active and in to sport, I bled into my joints (ankles, knees, hips, spine, shoulder) it was put down to the HHT, but have recently been informed that it is not a component of it.

I was informed it seems more like a genetic bleeding disorder; at which point my mum and I remembered my specialist when I was bleeding heavily as a teen undertaking clotting tests... and we remembered him mentioning VWD...

Around the same time, I was put on tranexamic acid, and the pill.... and we discussed how HHT was of vital importance and the treatment of that was most important at that time...

So I am know, wondering what those test may have shown at the time.... will discuss and organise testing next time I see my doctor

• ▶ Reply

Permalink Reply by Jenna on April 14, 2012 at 6:18pm

I've recently found out the pill I've been using to control gynecological bleeding is causing high blood pressure. HBP is obviously not good, but for me the far scarier part of this is potentially having to change my treatment for controlling the bleeding. Going back to my GP this week, will find out then what the treatment options are.

• ▶ Reply

▶ Reply to Discussion