This comes from the Centers for disease control and prevention.
CDC conducts research to:
Learn more about the number of people with bleeding disorders and risk factors for complications.
Develop and implement interventions that will help prevent complications of bleeding disorders, such as bleeding after pregnancy.
Create and deliver health promotion messages to encourage early diagnosis and treatment to prevent unnecessary complications and to help women make informed decisions about their own health care.
Discover blood tests through laboratory analysis that can help identify people who might be at risk for complications from bleeding disorders.
Oklook iI have been a part of the cdc’s study since 1987 I feel more information is always better but having said that I was 13 when diagnosed. I went through 2 years hard worry and then realized I am. The same person I always was. I couldn’tlive in fear and have survived tthings that they didn’t think I would! You need to watch yourself but don’t let your diagnosis define you! We are different than most people but vwd is as much a strength as it is a weakness. I am in medical books for how fast I heal and was told that is a sidefect of the vwd and remember it is genetic so there is no cure.
I just still wish they would develop a medication that we could take daily which would make us "normal". If they can develop meds for cholesteral, they should be able to create something for us. The psychological aspects of it are quite hard to deal with at times. Although I knew I had it, it never affected me before, but since my incident in September, I'm still trying to get back to normal. My PCP recommended either medication for anxiety and depression or counseling. When I reviewed the medication pamphlet very closely, I saw there was a chance of it causing bleeding issues! Obviously I'm not taking it and won't take anything no matter how small the risk. Now I'm trying counseling. In a recent discussion, we were opening some mental "doors" and I'm now realizing why I'm so terrified. As a child I recall hemorhaging and when having the blood clots coming from my nose and mouth at the same time, I felt that I couldn't breath. I was too young to realize the potentially dangerous situation I was in otherwise. Then, as an adult, a surgeon gave me cryoprecipitates without my knowledge or consent. It caused a TIA (mini-stroke). These incidents have left indelible memories.
Yes, very optimistic! In the 70s my little brother, after being found in pools of blood while sleeping from nose bleeds--we'd call the ambulance then he would go to the ER and have his nose cauterized then would come home with a teddy bear. IT was very dramatic and frightening.
Now we have a son who has VWD Type 1 and what a difference in the past 45 years with management. We still have to go to Children's Hospital, if we can get there and we've learned the Puget Sound Blood Center often consults with ER Docs. I have had to as a parent, strongly advocate & recommend Urgent Care MD's to follow protocol and call Puget Sound Blood Center for advice when injury was downplayed 'as normal'--which resulted in giving Stimate (our son is Stimate responsive).
Managing the bleeding disorder now days with the education and medicine available is so much better than when I was growing up. That said, Hematology is so complex! It takes awhile to process all the information and learn how to manage better such as, restricted liquids after medicine dosing, Stimate Nasal Spray, consulting if there needs to be 2nd or even 3rd dose at the 48 & 72 hour after first does. Understanding there can be a drastic sodium level drop, which would require a blood test. Then there are several types and subtypes with each. Some patients respond to Stimate, some do not!
There also needs to be more information about "Acquired VWD" . My step brother had a nose bleed that would not stop! He had to stay in the hospital a couple times for treatment and be given blood. He got annoyed with me when I tried to emphasis he be checked for VWD (acquired) as he had treatment and surgery for cancer previously. Because the hospital MDs couldn't explain the bleeds it was left undiagnosed and the MDs assessment is what he chose to go with and got annoyed at my concern. (And it was frightening to see how many of his friends on Facebook, though well intended offered all sorts of advice while his nose would not stop bleeding)!
There needs to be better information for blood tests given to Pediatricians and MDs, because we learned the blood test has to be fresh, yet we've known family members whose doctors did not get a fresh test.
I have only now learned that I am likely a symptomatic (female) carrier. I had horrible menstrual bleeding. For years I thought it was normal, and I wondered how other women functioned at work etc with their cycles. My daughter in law told me I used as many tampons with one period as she uses in one full year! I remember being told by a nurse that the reason I had such heavy periods was because I had good nutrition! I was so gullible! I was unable for most of my adulthood to make a personal connection with my family members bleeding disorder and my issues. Maybe people talk about menstrual isses more openly now days. I will be looking out for my daughter. Hopefully research will continue to progress the management of bleeding disorders.