5 Strategies for Living Well With von Willebrand Disease

 

ASH Highlights: Which Clinician Usually Diagnoses Von Willebrand Disease Patients?

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Presentation #5: Growing Older with von Willebrand Disease

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Von Willebrand Disease

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5 facts about von Willebrand Disease (vWD)

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Women and Bleeding Disorders: Living with von Willebrand Disease

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Tips for living well with von Willebrand disease (VWD) Living with VWD may be stressful at times, but there are ways to help manage the condition. You can use these simple tips to help prevent bleeds and prepare for emergencies. Carry identification with VWD medical background • It’s important to have identification with you at all times. Von Willebrand disease (VWD) is a disorder that reduces your blood’s clotting ability. This is usually caused by a lack of the protein Von Willebrand factor (VWF) but it can also be caused if the VWF proteins in your body are faulty and don’t work as well as they should.

Von Willebrand disorder (VWD) is an inherited bleeding disorder. People with VWD have a problem with a protein in their blood called von Willebrand factor (VWF) that helps control bleeding. They do not have enough of the protein or it does not work the way it should.

It takes longer for blood to clot and for bleeding to stop. VWD was named. Contact your doctor if you have bleeding that lasts a long time or is difficult to stop. Women with von Willebrand disease should speak to their doctor when considering pregnancy.

Your doctor can recommend precautions to lower your risk of complications. 5 How is von Willebrand disease diagnosed? Because von Willebrand disease is an inherited disorder, there’s usually a history of other family members having problems with bleeding.

It’s common to find grandparents, aunts, uncles and cousins who report bleeding problems. Once VWD is suspected, a series of blood tests is used to confirm it. Find VWD tips for pregnancy and childbirth.

Video: Living with Von Willebrand Disease. Meet three women and hear about their experiences living with von Willebrand Disease. media icon Low Resolution Video. GUIDELINES.

More. FREE MATERIALS. More. TREATMENT CENTERS. More.

View events in NCBDDD’s history ». Consider antifibrinolytics during perioperative period (up to 3-5 days) Management. DDAVP 0.3 mcg/kg (provides 3-5 fold increase in activity); only if known responder: Maximum effect 30 min post dose but levels remain elevated for 6-8 hours. DDAVP works by stimulating the release of vWF from endothelial cells. Factor VIII-vWF concentrates.

Most cases of von Willebrand disease are mild, and you may need treatment only if you have surgery, tooth extraction, or an accident. Treatments for von Willebrand disease include medicines to: • Increase release of von Willebrand factor and factor VIII into the bloodstream. • Replace von Willebrand factor. Following are some tips for living a full and rewarding life with von Willebrand disease.

People with von Willebrand disease should: Avoid over-the-counter medicines that affect blood clotting, such as aspirin, ibuprofen and other nonsteroidal anti-inflammatory drugs (also known as NSAIDs). Treatment for von Willebrand disease. Each von Willebrand disease (VWD) diagnosis is unique in type and severity—these factors impact the treatment approach.

1 Medicines for VWD are used to 1: Increase the amount of von Willebrand factor (VWF) and factor VIII into the bloodstream.

List of related literature:

DOs and DON’Ts in Managing von Willebrand’s Disease:

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Managing patients with von Willebrand disease type 1, 2 and 3 with desmopressin and von Willebrand factor-factor VIII concentrate in surgical settings.

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Tiede A, Rand JH, Budde U, et al: How I treat the acquired von Willebrand syndrome.

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Guidelines for the diagnosis and management of von Willebrand disease in Italy.

“Handbook of Pediatric Transfusion Medicine” by Christopher D. Hillyer, Christopher Hillyer, Ronald Strauss, Naomi Luban
from Handbook of Pediatric Transfusion Medicine
by Christopher D. Hillyer, Christopher Hillyer, et. al.
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The diagnosis of von Willebrand disease requires a careful personal and family history and appropriate laboratory testing.

“Clinical Maternal-Fetal Medicine” by Hung N. Winn, John C. Hobbins
from Clinical Maternal-Fetal Medicine
by Hung N. Winn, John C. Hobbins
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Guidelines for the diagnosis and management of von Willebrand disease.

“Blood and Bone Marrow Pathology E-Book” by Anna Porwit, Jeffrey McCullough, Wendy N Erber
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von Willebrand’s Disease (vWD) —Avoid cryoprecipitate.

“Master the Boards USMLE Step 3” by Conrad Fischer
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Acquired von Willebrand disease: concise review of occurrence, diagnosis, pathogenesis, and treatment.

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INTERVENTIONS: Prevent bleeding Administer Desmospressin to increase von Willebrand factor.

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Type 2 von Willebrand disease is characterized by a defect in the function of vWF, and facilitation of release is not helpful.

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Oktay Kutluk

Kutluk Oktay, MD, FACOG is one of the world's foremost experts in fertility preservation as well as ovarian stimulation and in vitro fertilization for infertility treatments. He developed and performed the world's first ovarian transplantation procedures as well as pioneered new ovarian stimulation protocols for embryo and oocyte freezing for breast and endometrial cancer patients.

Mail: [email protected]
Telephone: +1 (877) 492-3666

Biography: https://medicine.yale.edu/profile/kutluk_oktay/
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11 comments

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  • I have this as well, it sucks because I have to wear a medical bracelet all day. I also have to get a depo shot every 3 months because birth control makes me sick. I missed almost 3 months worth of 5th grade as well.

  • Now I’m 36 years old, and dealing with a period going in day 17 and counting! I have passed blood clots larger than a quarter. It’s now flooding out of me.

  • Not fun! Was in my late teens and diagnosed. Abuse questions for family entire life. Dentist procedures were planned for weekends for me to “recover.”
    I was a tomboy.
    I had many bad events bleed for days.

  • I have Von Willebrands but it’s not as severe as these women’s. Still, I am anxious about pregnancy a little bit and complications from that. I suffer from fatigue and migraines and also easy bruising and bleeding, though not to that extent. It gets better when my period is done (fatigue and migraines), especially these days with altering my diet to be sensitive to my food sensitivities and with taking progesterone cream for my hormone imbalance.

  • I struggle with this also. I was put on birth control before junior high because of my periods. It is a very strange and unpredictable problem I have. If anyone has anything to say please comment because it is an issue and I would love to hear what you have to say regarding

  • I was diagnosed with menorrhagia after I had my first child I started hemorrhaging four weeks after and lost my job because of it. I would miss three days every month due to heavy bleeding but I would bleed for seven eight days and doctors just ignored it. I had to use two super pads from my start of my pelvis to the top of my crack of my butt then I’d wear super tampons and panties that were sold for that time of the month. I was also had anemia. My doctor tried estrogen pills but stopped them. My mother was also a heavy bleeder. I had to accept this as normal. My doctor told me the only way to cure this is to have a hysterectomy. I didn’t want to lose the chance to have one more child which never happened. I started menopause when I hit fifty and was so glad that it just stopped and never started again. It was a blessing. I know know that it must have been von willebrand disease and my daughters have it to.

  • I was diagnosed when I was 2 years old during a pre-op for surgery. It only got worse after I hit puberty, I have to get IV treatments for helping slow the blood. I would be bedridden for a month during one of my periods and I had to force myself to wake up most days. I was on birth control by age 12 to help the bleeding and I have to jump from one birth control to another to keep my period in check. What sucks is I got a tattoo it bled so much during the time I got it and I had to do a treatment afterwards to help the bleeding and healing.

  • Unless I am only the prestaged connection to vonWillebrands disease or some form of hemophilia that is unspecified. Hemophiliac of the uterus or womb. I already have periods that last 8-10 days and I know they will worsen when I reach my 40’s and I menstruated since 11 years old, and I am now 33 years old. 24 years now which means it will probably worsen in 7-8 years from now.

  • Some forms of vonWillebrands disease probably doesn’t show until some women reach about 40’s. I had bleeding gums when I went to the dentist as a child.

  • Mennorphagia-metorrhagia could very well be a closely related condition to vonWillebrands disease or hemophilia. It seems to be a different from hemophilia. It’s a condition that causes heavy and prolonged menstural period bleeding.

  • I have never been diagnosed with this condition, but back in 2009 with a risk of heavy bleeding through menstural cycles and ovarian cyst. Menorhaigia-metorrhaigia. I have strange periods. My great grandmother hemorriaged to death at 49. These conditions must happen at any age without knowing it. I have bled through my rectum and back in 2011 I had a mysteryI was swelling around my ankles,stomach, arms and retaining fluid. There was a protein in my urine and now I notice a new symptom orange blood in my period blood. I have a mystery that dates to 2011. My body is sensitive and I do briuse easily. If this is what I might have it could be von Willebramds Disease type 1 or 2. Many women don’t know they have it.