Von Willebrand Disease (VWD) is an inherited bleeding disorder in which blood doesn't clot properly, leading to bleeding episodes and joint problems. Those physical symptoms also may take a toll on emotional health, according to a new study in the journal Haemophilia, the journal of the World Federation of Hemophilia.
About 60% of the patients in the study met the criteria for depression or anxiety, the study’s 12 authors wrote. That’s well above the average for the general population of U.S. adults. The 77 participants, who are patients at hemophilia treatment centers in seven U.S. states, included men and women as well as children as young as 12.
The researchers used validated mental health questionnaires and also recorded data about the participants’ health-related quality of life and joint problems. To better understand the study, we asked pediatric hematologist Leonard Valentino, who is Chief Executive Officer of the National Hemophilia Foundation (NHF), about the findings. Here’s what he said:
Do the findings in the study surprise you? Why or why not?
As a pediatric hematologist, the findings in the study did not come as a surprise. According to data from the Centers for Disease Control and Prevention (CDC) and the National Institute of Mental Health (NIMH), about 5% of people 18 years of age and older living in the United States suffer from depression. This figure is from 2019, prior to the pandemic, and I suspect it's considerably higher today. This equates to more than 15 million people in America with depression. Suicide is the 11th most frequent cause of death in Americans claiming more than 50,000 lives each year. The NIMH estimates that one in five Americans or about 60 million people have a mental illness diagnosis and that includes about 8% of adults who have major depression, and strikingly about 17% of 18 to 25-year-olds where this is truly a pandemic. It's even more frightening to consider that 32% of 13- to 18-year-olds have been diagnosed with an anxiety disorder. Living with a chronic condition like von Willebrand disease in which there is always the fear of bleeding is already stressful enough on someone’s daily life – but living with a disorder that is also misunderstood, rare, and not widely understood, can cause even more anxiety and lead to long-term bouts of depression.
Looking at the patient population in general, how could managing VWD cause stress and contribute to feelings of depression and anxiety?
The typical person living with von Willebrand disease suffers unnecessarily on average 16 years before the correct diagnosis is made. During this time, there can be bleeding, hospitalizations, surgeries and inability to obtain an accurate diagnosis. This is very stressful especially when medical complaints are minimized or even ignored by doctors and nurses who don’t understand the disease. Once the diagnosis is finally made, regular treatment, constant appointments, medical gaslighting and continual battles with insurance would inevitably lead to cases of depression and anxiety in most people. Patients living with VWD are lived experience experts in the trials and tribulations of existing in a health system that does not prioritize rare disorders.
What can patients do to cope?
An important way to tackle stress, anxiety and depression, is to talk about it. This month (May) marks Mental Health Month so now is the time to start conversations and erase stigma. One easy way to do this is by submitting questions to the Ask a Social Worker column – a licensed social worker will answer your question – which may help other readers feel less alone, as well. If someone is considering suicide, help is available by calling 988, the Suicide & Crisis Lifeline that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week in the United States, or from the American Foundation for Suicide Prevention (AFSP) or the National Alliance on Mental Illness (NAMI).