Hi everyone my 1 year old son has just been diagnosed with type 3 von willebrands disease and I was wondering if many other people have this type of vwd and there experiences of having a child with the disorder thanks
It's not very common at all 1 in a million, I'm up in Leeds UK and have type 3(and I'm 42) but have no children. Are you getting support with moving your son onto injections of Wilate? (Or Haemate P?) Helen xx
Type 3 VWD I have seen in a few articles to be 3.5 of 20 million (though never seen a really solid estimate given the method of derivation). I am 31 and have type 3. Ill write more later since I'm at work now.
Hi Gareth! I am 26 years old and have Type 3. I also have a 32 year old brother who has type 3 as well. He was diagnosed shortly after his circumcision and I was diagnosed about 2 weeks old. We have each had our share of issues growing up but we're alive. My major issues were nosebleeds, mouth bleeds, and of course menstrual. My brother was a hellion on a bike growing up (BMX biking). Just recently he had a very bad GI bleed to where he had to have whole blood twice & was hospitalized for about a week. Not trying to scare you! But I have plenty of stories if you're interested. I say with good communication with your HTC, he should live a normal life. One big tip of advice is to make sure when he starts school, you have your HTC nurse have a meeting with all his teachers, principal, & school nurse each year. That way they understand fully about the disorder. I'd love to chat with you more, so feel free to ask any questions you may have! :) I love helping others and talking with others who have type 3 like me.
My 4 year old daughter has type 3. Suspected at 4 months old, officially diagnosed at 6 months old, symptoms from birth.
Super scary at first, but we have been very lucky that she has had very few injuries and rarely ever needs infusions.
Biggest issue is bruises at this point. She always has them and it draws attention. We are so used to them now that I hardly notice them. Just started Pre-K and had the HTC provide info to the school.
Our biggest ordeals so far have been that since she was a healthy chunky baby starting at about 6 months they couldn’t get a vein when an infusion was needed. She had to get an infusion before her vaccines. She would end up getting poked 4 times by a home nurse, which eventually lead to us having to go to the hospital. Hospitals do the same thing. I explain and they end up poking her 6-7 times and eventually always put in an iv just for a quick infusion.
We started having issues with nose bleeds when she was about 3. We have had some bad ones in the past year. Having the Amicar works wonders and it takes until about the third dose for a bad nosebleed to stop, but we continue it for several days.
Overall, once you get over the initial shock it’s not that scary. Get a medical bracelet, educate your family, friends, daycare, etc and ignore people that you don’t know.
FYI…She always manages to get a bruise on her face right before pictures!
Thanks for all your replies! He is a typical little boy will not sit still for 2 mins always on the go and just started walking and obviously the falling that comes with it, he is covered in bruises from head to toe and it’s very upsetting to see how other people look at is as bad parents when taking him out and people look and you know they looking at him and us and judging you but I guess that’s something we will just have to deal with!
Sorry for missing this question. I have type 3 vWD which was acquired through an immune system malfunction a few years ago. I am 74 years old so I can't tell you much about children with this disease but my personal experience is that you need to have a supportive Hematologist and a local Hospital that will cooperate with you when you advocate for you child.
In my case, I had issues with the Pharmacy getting coagulation factors and that problem was solved by the intervention of the "patient ombudsman" in the Hospital Administration. The Pharmacy actually worked a deal with an Alphanate supplier to have it in stock all the time at the Hospital. I am the only patient who needs it but I can't predict bleeding episodes I get from arterio-venosal malformations in my GI tract. When I need the alphanate, I need it right away so I am thankful for the cooperation from the Hospital. Alphanate is VWF factor and factor 8 which are typically missing in vWD type three. In your case you will need that type of support from minor injuries. So try and develop a relationship with the ER staff and the Nursing Office so that the staff realize when you come in your child will need special care.
I have spent a lot of time in the Hospital and IV outpatient center and I always have detailed descriptions of vWD and treatment protocols to explain to staff, Most Hospitals do not see vWD patients of any kind often enough to be aware. Especially with type three, a strong response is called for. Most Hospitals now realize that these "rare disease" patients usually know more than they do and will appreciate your knowledge of your child's disease. NIH and Mayo Clinic have good resources available online.
Sorry again for missing your post.
John the elder
My heart goes out to you and your little boy. Don’t let the ignorance of people on the outside looking in get you down as long as you know you are a great mother that is what matters :).
I would like to ask if you could tell me how your pregnancy was with your son? People on my discussion are being very discouraging and telling me that I will die if I have kids.