By Dr. David Clark
A 2007 study of depression in adult male hemophilia patients conducted by the Arizona Hemophilia Treatment Center (HTC) in Tucson found that 37% of patients experienced depression.1 This is about twice the incidence in the normal population and has rightly become an important issue in the hemophilia community.
It is not surprising that mental health issues, especially anxiety and depression, arise in people dealing with a major disorder like hemophilia. However, if not treated, such issues can lead to other problems, both social and medical. Feeling anxious and/or depressed can lead to problems with school or work and interfere with relationships. Depression is also linked to an increased risk of suicide. It can also affect physical health, as we’ll see below.
We always say that hemophilia affects the whole family, and that holds true for any related mental health issues. Not only the individual patient but also parents, other caregivers, and other family members can be affected. A very depressed caregiver may not be able to properly help his/her child with their hemophilia. A depressed adult with hemophilia may not adhere properly to their treatment regimen. A depressed patient may display unhealthy behaviors such as smoking, alcohol/drug abuse, eating/drinking too much or too little, lack of exercise—behaviors that contribute to poor overall health.
Thus it is very important for patients and caregivers with mental issues to seek treatment. Unfortunately, many affected people also have a lot of anxiety about seeking treatment, which only adds to their problems. Although both hemophilia and a number of mental conditions may all be caused by genetic defects, a physical disorder is somehow seen as something unfortunate (“You’re having a knee bleed? How can I help you?”) while a mental disorder is often blamed on the patient (“You’re crazy! Leave me alone!”). In our supposedly enlightened society, there is often a stigma attached to mental illness by otherwise well-meaning people. This can drive the sufferers to avoid people and just try to get by with a disease that might be easily treatable. By focusing more on mental health, the hemophilia community hopes to bring our affected brothers and sisters the help they need.
Mental illness, including anxiety and depression, is a real illness—just as real as hemophilia. It needs to be taken seriously and can be treated.
However, getting the proper treatment can also be a challenge. (My own experiences as a non-hemophiliac with serious mental health issues inform the comments here. I’ll write more about that in a future issue.) There is a shortage of mental health providers in the United States, and insurance issues can further limit the options available. Although insurance companies are required to cover mental health the same as they do physical health, the companies have many ways to limit coverage—for instance, by only covering a small network of mental health providers.
Those who receive their hemophilia treatment from an HTC actually have an advantage. Under their comprehensive care model, most HTCs employ social workers to help patients and families deal with their disorder. If you have an HTC social worker, please be open with them about problems you’re having. They can do a lot—everything from helping you themselves to getting you to people who can help you with more serious issues.
Depression and anxiety often go together. Many times it’s difficult to tell which you’re experiencing. They are different, though, in that depression can often be well controlled (mine is) but anxiety is much harder to treat (mine is a constant problem). Both can be treated with drugs and/or counseling, preferably both. Psychiatrists are medical doctors (MDs) who can prescribe antidepressants and other drugs. Today, most psychiatrists only prescribe drugs—they don’t do counseling. Psychologists, social workers, therapists, and other mental health professionals do the counseling. Don’t be misled by degrees and titles (although in many states mental health professionals must be licensed or certified). Knowledge helps, but what’s more important is how you and the counselor relate to each other. If you feel like you can’t speak openly or don’t think they understand your problems, they might not be the right one for you. You may need to interview several therapists (usually free consultations) to find the right one.
Link to Physical Health
Now that I’ve given you a pep talk about getting treated, I want to focus on some of the reasons this could help your physical health also. A group of Belgian researchers from the University of Leuven recently published a review of studies on the relationship between mental disorders and heart disease.2 They first point out that depression is expected to become the leading cause of disability worldwide by 2030. Also, about 14% of all deaths worldwide are attributable to mental disorders. Of course, people with heart disease tend to have higher rates of anxiety and depression, just like hemophilia patients and anyone suffering from any major medical issue would. The intriguing thing is that conversely, people with anxiety and depression tend to have higher rates of heart disease. The researchers suggest that there may be a common physiological connection between the two.
It has always been thought that hemophilia would protect you from heart disease because heart attacks are caused by clotting in the blood vessels supplying the heart. However, until recently, there haven’t been enough older hemophilia patients to really test out this theory. Recent studies suggest that hemophilia patients have just as many heart attacks; they just don’t die from them as often. However, the heart attacks still cause damage and impact a patient’s quality of life.
The authors of the Belgian study report that depression causes about a 30% increased risk of heart attacks and a 36% increased risk of death from one. Anxiety also seems to cause a higher risk of heart attacks, but less than depression does. It is very difficult to tease out the separate effects of depression and anxiety since they often occur together. Another disorder, post-traumatic stress disorder (PTSD), is usually associated with soldiers in combat, but it can arise from any traumatic event, including bad experiences with hemophilia. PTSD appears to increase the chances for heart attacks by about 27%. Interestingly, a study on 281 pairs of twins, where only one twin suffers from PTSD, showed that PTSD more than doubled the incidence of heart disease (22.6% vs. 8.9%).
The authors go on to speculate about what the physiological connections might be between mental health and heart disease. There are a number of possibilities that need to be studied further—it’s not just “all in your head.” Mental illness, including anxiety and depression, is a real illness—just as real as hemophilia. It needs to be taken seriously and can be treated. When you’re already dealing with hemophilia, you shouldn’t needlessly suffer from mental issues, too. If you have these problems, talk to somebody!
1. Information in the first part of this article comes from Rita Colorito, “Putting the Spotlight on Mental Health and Bleeding Disorders,” HemAware, the magazine of the National Hemophilia Foundation, available at https://hemaware.org/mind-body/putting-spotlight-mental-health-and-bleeding-disorders. The article includes a lot of good information from Debbie de la Riva, a licensed counselor and member of the hemophilia community, plus links to many useful resources.
2. The Belgian study is published (in English) in M. DeHert, J. Detraux, and D. Vancampfort, “The Intriguing Relationship Between Coronary Heart Disease and Mental Disorders,” Dialogues in Clinical Neuroscience (2018) 20 (1):31–40.