Living with von Willebrand’s Disease

If you have von Willebrand disease (vWD), you can take steps to prevent bleeding and stay healthy.
For example, avoid over-the-counter medicines that can affect blood clotting, such as aspirin, ibuprofen, and other nonsteroidal anti-inflammatory drugs (NSAIDs). Always check with your doctor before taking any medicines.
Tell your doctor, dentist, and pharmacist that you have vWD. Your dentist can ask your doctor whether you need medicine before dental work to reduce bleeding.
Be physically active and maintain a healthy weight. Physical activity helps keep muscles flexible. It also helps prevent damage to muscles and joints. Always stretch before exercising.
Some safe physical activities are swimming, biking, and walking. Football, hockey, wrestling, and lifting heavy weights are not safe activities if you have bleeding problems. Always check with your doctor before starting any exercise program.
Your parents, brothers and sisters, and children also may have vWD. Talk to them about your diagnosis and suggest that they get tested too.
The I.H.S. spoke to a woman with von Willebrand’s Disease. Here she tells us her stories and the impact von Willebrand’s Disease has had on her life. 
Growing up with von Willebrand’s in the 1960’s was a lot different than it is now. When it was discovered that I was a “bleeder”, my mother was confused as to where this all came from. We didn’t know that there was a medical name for it for a number of years. On the advice of the district nurse I was encouraged to use ice packs for the bruising and put pressure on the cut or graze to stem the bleeding. None of my brothers or sisters had any problems with bruising or bleeding so, therefore, my mother was unsure what to do when a crisis arose. With my unusual bleeding condition, all care was taken to ensure that I didn’t get into too much mischief to worry my parents.
But that always wasn’t the case. I remember on one occasion I was out helping my brothers and sisters do some chores on the farm and of course, I was the one who took a tumble and ended up with a huge gash on my forehead. My mother was frantic and I was placed on the couch beside the fire, holding a towel to my head and under strict orders not to move for the rest of the evening. I did bleed for some time and I remember it being a day or two before the wound started to heal. The reality now is that I should have been quickly brought off to hospital and had the wound stitched, but when you live in rural Ireland and are not close to a train station or didn’t have access to a bus route the home remedies are first to hand and were quickly put into action.
When things were going well the bleeding condition was put to the back of our minds, but not forgotten about. However, a routine visit to the dentist, when I was about eleven years old, brought it all tumbling back into our lives again and made us rush into “bleeding” mode again. The dentist said there was a lot of overcrowding and I would need some extractions. So, more expert advice and care was needed. My parents were not taking any chances as they knew that this wouldn’t be straight forward and I remember being brought to the Children’s Hospital in Crumlin.  This was a huge adventure for me because I was getting to go to Dublin for the day. But the day turned into another day and another day. I think I was kept it for about a week and I was so homesick I thought I would never see my family again. But with the teeth taken care of I was glad to be re-united with my family again.
There was another occasion when I was looking forward to going on a school trip and I had to bring my bus money into the school a few days before the trip and I was so excited I was running all the way there, when I literally hit the ground running and cut both knees. I had to turn around and go back home to have both knees bandaged. Later I headed back to school with the money safely in my school bag. Luckily the trip wasn’t for a few days and I had time to make a good recovery. It turned out to be a great school trip with no adventures or mishaps to worry my mother.
When I started having my periods it was another very anxious time for everyone. I was in hospital for a few days at a time and it was around that time that there was a name put on my bleeding problem. von Willebrand’s disease had made its debut into my life and unfortunately was here to stay. At least we knew what was going on and we were advised what to do if and when I had any major problems.  I felt that I was a bit of a freak among family and friends, because no-one else had this problem with the weird name. So therefore, it was hard for my friends to understand the severity of this condition and the impact it was having on my life.
Naturally, with all the disruptions my school work and attendance suffered and I ended up having to repeat a year and I wasn’t too happy about that. It is hard to explain to your friends that you have something going on in your body and you have absolutely no control over and have to do your best to live with it. But thankfully as we all got older and wiser we were able to talk about it and understand the meaning of all these hospital visits and check-ups and the important role they played in my life.
During my adult life, I had many eventful times and prolonged hospital visits, some of them too difficult to talk about and resulting in many different health issues. Thankfully, there have been many wonderful advances in the treatment of people with bleeding disorders and we know that the care we get is second to none. In the 1990’s I was going through a bad time and I was privileged to be put in touch with the Irish Haemophilia Society who were a brilliant support and helped me through.
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