VonWillebrandGlobal.com Challenges Survey 2018

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* 1. Age of participant? (please specify months if under 1 years old)

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* 2. How does Von Willebrand Disease affect you?

I have been diagnosed with Von Willebrand Disease.

I have 'low Von Willebrand Factor' levels but not diagnosed with Von Willebrand Disease.

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* 3. Please tick the box of each patient comment that also applies to you, too:

"My general/primary practitioner does not know what von Willebrand Disease is. I would have benefited from this if they had resources."

"My Haematologist/Hemophilia Treatment Centre is not very educated or experienced in Von Willebrand Disease." (i.e. may not know about all subtypes, testing and treatment options)

"My levels are low - but not low enough for a diagnosis. I have present significant and various bleeding symptoms."

"I was tested for Von Willebrand Disease whilst on hormones/contraceptives that hindered my test results. My doctor does not know or recognise this as an issue in treating my severity of symptoms as a female."

"I was denied treatment because I'm Type 1 Mild despite I struggle with bleeding symptoms."

"I learnt about Hemophilia in school but not Von Willebrand Disease. I would have benefited from this if I had resources."

"I am refused further testing for other types of Von Willebrand Disease because I am told my levels are not low enough."

"There is no clear recognition on Von Willebrand Disease Type 1 Severe."

"I have been dismissed that Type 1 can only be mild which is not true for me."

"My period is not considered significant for treatment. I am only offered gynaecological solutions as a female."

"I am refused treatment for bleeding in my joints, muscles or soft tissue because I was told it's not possible in Von Willebrand Disease."

"I feel my doctor always tries to blame my bleeding symptoms on 'other illnesses' I don't really have or have been proven to have when I bleed in certain places." (i.e. Endometriosis, Bowel issues, Gum disease, Sinus issues/infections, Bladder issues/infections etc)

"My doctor does not listen to my concerns or pay attention to my bleeding symptoms because they believe Von Wilebrand Disease is not a severe condition."

"I've been refused prophylaxis (routine prevention treatment doses) because I'm not considered severe enough but I'm unable to participate in many activities without suffering from my bleeding symptoms. I feel I would benefit from at least a trial to improve my care."

"I have been told by a medical professional (doctor, nurse etc) that Von Willebrand Disease can only be mild or can never cause a serious threat to me."

"I feel there is is a considerable amount of incorrect information online; I would consider them to be 'myths'."

"I presented to an emergency department more than once for bleeding symptoms but still not screened or referred to be tested for Von Willebrand Disease."

"I received blood transfusions for bleeding complications following surgery, trauma or pregnancy and still wasn't screened for Von Willebrand disease. I feel this should be a standard protocol test considering to it's the most common bleeding disorder."

"I suffer from anxiety, post traumatic stress disorder, depression or similar condition as a result of receiving poor care."

"I was denied diagnosis or treatment as an adult up until my child was diagnosed then I was taken more seriously."

"I am struggling to receive an exact subtype confirmation of Von Willebrand Disease and not referred for second or more experienced opinion. My doctor does not consider it important or take it as seriously as I would like them to."

"Despite I have had either (a) severe symptoms, (b) dangerous sodium levels, (c) allergic reaction or (d) heart complaints, or other complications in response to DDAVP; I have not been offered another option of treatment." (i.e. brand names for DDAVP are also known as Stimate, Minirin, Octostim, Desmopressin)

"My doctor tells me my body responds well to DDAVP treatment; but it does not successfully manage my bleeding symptoms, or it does for a short time and I begin bleeding after 6 hours again."

"My local bleeding disorder community focuses more on Hemophilia and hardly focuses on Von Willebrand Disease."

"I feel that bleeding disorder events and organisations labeled as Haemophilia should be inclusive on Von Willebrand Disease by addressing generally as the term 'Bleeding Disorders' or something more inclusive."

"Majority of education and resources available to me about Von Willberand Disease do not reflect my symptoms and experiences very accurately."

"Medical professionals have dismissed my concerns and symptoms because it is not in their medical textbook."

"My doctor has had to google what Von Willebrand Disease is."

"I cannot afford the cost of my treatment. This compromises my quality of life."

"The medication used to treat my Von Willebrand Disease is not available or carried in my local hospital. This worries and inconveniences me."

"I have a team of doctors who disagree with each other about my Von Willebrand Disease diagnosis and treatment plan or refuse to communicate."

"Medical professionals do not understand that common treatment options for my Von Willebrand Disease does not work for me; and they do not listen to my needs or follow my treatment plan."

"I feel lack of support and inclusion due to having Von Willebrand Disease amongst my Hemophilia treatment centre."

"I feel lack of support and inclusion due to having Von Willebrand Disease amongst my Haemophilia Patient Support Network."

"My Von Willebrand Disease symptoms and concerns have been dismissed by medical professionals and I've been referred for psychological assessment because I was told they are not real."

"I was thought to have or was diagnosed with Hypochondria, or called "Attention Seeking" by doctors who thought my Von Willebrand Disease symptoms are not significant."

"I have not been offered all management options for my symptoms; despite I know there are others available."

"My bleeding symptoms were dismissed from one or more emergency department visits because of my Von Willebrand Disease diagnosis."

"My health insurance does not cover either costs for testing, genetic testing, range of treatments I require." (If your country applies)

"Medical professionals have indicated to me that Von Willebrand Disease is too "tricky" or "complicated" for them to offer full assistance."

"I have had a family member die from untreated bleeding symptoms spontaneously/from trauma/during surgery."

"My doctor did not consider/understand that Ehlers-Danlos Syndrome contributes to my bleeding symptoms.

"I have had to tell a doctor I'm a Hemophiliac because they did not understand what Von Willebrand Disease was, to help me."

"I didn't know that I do not have to consent to management options I was offered by my doctor for bleeding symptoms. If I had known I would have exercised my rights as a patient from the beginning and requested a different option of care."

"I have been undiagnosed with Von Willebrand Disease because my levels are not low enough according to the doctor I consulted; but I still experience bleeding symptoms."

"My doctor told me I don't look sick; therefore wouldn't offer me treatment for my bleeding symptoms."

"I have been told I will grow out of Von Willebrand Disease as I age."

"My gynaecologist had difficulties explaining my heavy periods; Von Willebrand Disease should be a better understood condition by these doctors."

"My school/employer were mistaken by my bleeding symptoms and suspected I was a victim of abuse."

"I've been brushed off and told by a doctor that my excessive bleeding symptoms was just 'normal' for me"

"I have been unable to work because of my bleeding symptoms and my doctor isn't bothered by this."

"I don't feel World Haemophilia Day best represents my bleeding disorder or help my family and friends understand; I'd like to see Von Willebrand Disease celebrated separately."

"My doctor told me I can't be Type 2 because my multimers were normal, which wasn't true."

"I had to consult with more than 3 hematology doctors to get my diagnosis; it's been exhausting."

Other (please specify)

VonWillebrandGlobal.com Challenges Survey 2018

This survey was created to address the most common issues our community faces. Allow 5 minutes.

Question Title

* 1. Age of participant? (please specify months if under 1 years old)

Question Title

* 2. How does Von Willebrand Disease affect you?

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* 3. Please tick the box of each patient comment that also applies to you, too:

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* 4. In what country do you live?