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Von Willebrand disease

Syndroma von Willebrand

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The commonest inherited bleeding tendency — in women a very heavy period is often the first and long-overlooked sign.

Also known as: vWD · von Willebrand factor · inherited bleeding tendency · heavy periods · easy bruising

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This compilation is for information and replaces neither medical diagnosis nor treatment. If you have symptoms, see a doctor.

The commonest inherited bleeding tendency — and nevertheless undetected for decades in many. If von Willebrand factor, a protein that helps platelets stick to an injured vessel wall, is missing or weak, it takes longer for bleeding to stop. This usually shows not dramatically but as a pattern of small oddities: bruises from light knocks, frequent or long nosebleeds, bleeding after tooth extraction or surgery, and — especially important — a very heavy or long menstrual period. Exactly here the diagnosis is most often missed: a heavy period is dismissed as normal or as merely a women’s topic, although it is often the first and clearest sign, sometimes from the very first period. A recurring iron deficiency anaemia without another explanation is a further reason to think of it. The syndrome is usually inherited in an autosomal dominant way and affects women and men equally — women simply notice it more often, because menstruation makes it visible. Severity ranges from barely noticeable to marked, which is why many affected people simply consider their tendency normal. Assessment covers clotting, the amount and function of von Willebrand factor and factor VIII; because values fluctuate, a repeat may be needed. Treatment is not continuous but targeted: before procedures, with injuries and with heavy bleeding — using medicines that release the body’s own reserves, factor preparations, or agents that slow the breakdown of the clot. For menstruation there are effective options. Important in everyday life: name the diagnosis before operations and dental treatment, and know that certain painkillers further increase the bleeding tendency.

Levers & pathways

studiedTake heavy periods seriously

Bleeding that lasts longer than seven days, is very heavy, restricts daily life or repeatedly leads to iron deficiency is not simply bad luck. In this syndrome it is often the first sign — and a good reason for targeted assessment.

studiedLook at the pattern as a whole

Individually each sign is harmless. Bruises, nosebleeds, bleeding after the dentist and heavy periods together — possibly also in relatives — form a picture.

studiedInform before procedures and dental work

With lead time, preventive treatment makes procedures safe. That is the practically most important benefit of the diagnosis.

studiedAvoid certain painkillers

Agents such as acetylsalicylic acid and related anti-inflammatories further increase the bleeding tendency. Which alternatives fit belongs discussed medically.

studiedKeep an eye on iron stores

Recurring blood loss empties the stores. Checking ferritin regularly and replenishing when needed often noticeably brings energy back.

associatedThink of the family

Because the trait is usually passed on dominantly, similar stories are often found in parents, siblings or children — which were never explained.

infoWhat the medicine does — and what it does not

Desmopressin releases the body’s own store of von Willebrand factor from the vessel walls — it works only in the forms where some is present at all, and the effect fades within days on repeated dosing, because the store empties. Factor concentrates replace it directly. Tranexamic acid helps with mucous membrane bleeding and heavy periods. Aspirin and anti-inflammatory painkillers are unfavourable here, because they additionally inhibit the platelets.

infoNumbers and timeframes

It is the most common inherited bleeding tendency: about one in a hundred people carries a change, but only about one in a thousand has symptoms. Typical are nosebleeds, bruises, heavy periods and bleeding after tooth extraction. Von Willebrand factor rises with stress, inflammation, pregnancy and on the pill — so it is not measured in such situations and the test is repeated if suspected. People with blood group O naturally have values about twenty-five per cent lower.

Possible complaints

studiedBruises from slight knocks

Larger bruises one cannot remember getting, mainly on arms and legs — for many since childhood and therefore felt to be normal.

studiedNosebleeds that last long

Longer than ten minutes, without a cause, repeatedly, in adulthood too. Likewise: gums that bleed regularly with brushing.

studiedVery heavy and long periods

More than seven days, changing every hour, clots bigger than a coin, an iron deficiency that keeps coming back. In women that is the most common route to the diagnosis — and the longest overlooked.

studiedBleeding after procedures

After a tooth extraction, tonsil operation or birth: bleeding that starts later than usual and lasts longer, sometimes with a transfusion. Such events in one’s own history or in the family are the clearest pointer.

Blood values

studiedFerritin

A low ferritin from recurring blood loss is often the first measurable trace — especially with heavy periods.

studiedHaemoglobin (Hb)

Anaemia can result from the blood loss — it explains tiredness and reduced stamina.

associatedPlatelets

Usually normal — this helps narrow the cause, since here it is not the number of platelets.

associatedINR / prothrombin time

Typically unremarkable in this syndrome — a normal clotting screen therefore does not rule it out.

Nutrients

studiedIron

Where blood is lost regularly the store empties long before the haemoglobin falls. Ferritin shows this earlier than the blood count — and refilling takes months, not weeks.

studiedVitamin C

Clearly improves the uptake of plant iron. A glass of orange juice or some pepper with the iron-rich meal does more than the choice of preparation.

associatedVitamin B12

Belongs in the workup of any anaemia, because a lack makes the same picture as iron deficiency — only with large instead of small red cells. Both can exist side by side.

associatedFolate

Needed for making new blood cells and quickly short with alcohol, in pregnancy and under certain medicines.

Supplements

infoIron

Clearly effective with proven deficiency, useless without. Take only with a documented deficiency — excess is harmful.

infoVitamin B12

Clearly worthwhile and well supported when deficient — vegan, older adults, certain drugs. No energy boost without a deficiency.

infoFolic acid / folate

In pregnancy clearly established against neural-tube defects, otherwise mainly with deficiency. Can mask a B12 deficiency — watch both.

Hormones

studiedADH (vasopressin)

Desmopressin, a derivative of this hormone, is the treatment of choice in the most common form — it draws the stored factor out of the vessel wall. Whether it works is tested once beforehand, not tried out in an emergency.

studiedEstradiol

The factor rises markedly in pregnancy — which is why affected women bleed less during it. After birth it falls quickly, and exactly then the bleeding risk rises again.

associatedT4 (thyroxine)

An underactive thyroid lowers von Willebrand factor and can cause an acquired bleeding tendency. With a newly appeared tendency and no family history the value belongs in.

Food

studiedIron with heavy periods

In von Willebrand disease heavy periods are the most common cause of iron deficiency in young women. Ferritin below 30 counts as deficiency even with a normal blood count.

Alternative approaches — what people use

studiedIron

Heavy periods are the most common cause of iron deficiency in young women here. Ferritin below 30 counts as deficiency — even when the blood count is still normal.