The Coalition for Hemophilia B

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Increasing PTSD Awareness 

BY KIM PHELAN

It’s a time to raise awareness of post-traumatic stress disorder. A mental health disorder, that develops in some people who have experienced a shocking, scary, or dangerous event. 

According to the U.S. Department of Veteran Affairs (VA). About 7 percent of veterans will experience PTSD at some point. This number varies depending on exposure. For example, the statistics of those who served in Iraq it is estimated that 15% have or will have PTSD at some point in their life. Veterans deployed to a war zone are more likely to have PTSD than those who did not deploy.

Many people think this only happens to those who served in the Military. This is not true. Anyone can develop PTSD at any age. There are currently 12 million people in the United States with PTSD.  And even though there is treatment for it, many do not get the help that they need. 

About 6 of every 10 men (60%) and 5 of every 10 women (50%) experience at least one trauma in their lives. Some may recover within a few months and but for others it may take years or may even begin long after the events occur.  PTSD can be treated using various therapy techniques and medications yet many do not get the help that they need. It is so important to recognize the effects of trauma instead of avoiding it. 

It’s natural to feel afraid during and after a traumatic situation, Fear is a part of the body’s “fight or flight” response, which helps us avoid or respond to potential danger. People may experience a range of reactions after trauma, and most recover from initial symptoms over time but those who continue to experience problems may be diagnosed with PTSD.  

Doctors aren’t sure why some people get PTSD and others do not. It could be a complex mix of stressful experiences, inherited mental health risk such as a family history of anxiety and depression, inherited features of your personality (often called your temperament), or just the way your brain regulates the chemicals and hormones your body releases in response to stress. Whatever the cause it is important to surround yourself with a good support system family, friends and talk to your doctor. Build a strong circle of support of people who will listen and give you comfort. You may need therapy for a time and some also reach out to their faith community.  Most important, is that you do not suffer in silence or isolate.  With the right help, support and tools you will learn will empower you and keep you from turning to unhealthy coping methods such as isolation and misuse of drugs and alcohol.  

PTSD affects survivors of sexual assault, severe physical assault, abusive relationships, serious accidents, natural disasters, or other traumatic events such as witnessing violence, unexpected death of loved one or parents of children with a life-threatening illness and according to the National Institute of Mental Health some may not go through the actual dangerous event but sometimes learning from a friend of family member who experienced trauma can cause PTSD

Symptoms usually begin within 3 months of the traumatic event and some emerge later. The symptoms will interfere with aspects of your daily life, such as relationships or work.  Treatment modalities may include Cognitive Behavioral Therapy, EMDR (Eye movement desensitization and reprocessing) and medication if needed. 


Diagnosis of PTSD can be challenging as most patients often seek help for physical symptoms without mentioning their trauma history.

Symptoms of PTSD may include:

  • Being easily startled, frightened, being on guard for danger

  • Feeling tense, on guard, on edge

  • Having difficulty concentrating, memory problems

  • Nightmares, trouble sleeping 

  • Irritability, angry outbursts or aggressive behavior

  • Engaging in risky, reckless or destructive behavior such as drinking too much or driving too fast

  • Flashbacks/Recurrent, unwanted distressing memories of the traumatic event

  • Severe Anxiety

  • Severe emotional distress or physical reactions to something that reminds you of the traumatic event

  • Avoidance - trying to avoid thinking or talking about the traumatic event, avoiding place, activities or people that remind you of the traumatic event

  • Negative thoughts about yourself, other people, or the world

  • Hopelessness about the future

  • Difficulty maintaining close relationships

  • Lack of Interest in activities you once enjoyed

  • Difficulty experiencing positive emotions or feeling emotionally numb

  • Overwhelming guilt or shame

  • Suicidal Thoughts

Only a trained professional can diagnose PTSD.  But here is a PTSD Self Screen Test you can take to see if you or someone you know may have it.

https://www.ptsd.va.gov/screen/

No one has to suffer alone.  We must remove the stigma and barriers to care as often seen across many cultures as taboo.  If we treat our body when it is unwell, then why would we not want to treat our mind too.

For information specific to hemophilia. I reached out to one of the leading experts in the field, Amanda Stahl, MSW, LICSW, a social worker at the Boston Bleeding Disorders Center to further touch on how PTSD directly affects people with bleeding disorders.  Amanda is the author of Posttraumatic stress disorder and posttraumatic stress symptoms among adults with hemophilia A and B, found that adults with hemophilia experience PTSD at rates 3 times higher than the general population. ​ 

Amanda explained, “Trauma symptoms in bleeding disorders might look different than in traditional PTSD, particularly as it pertains to avoidance and arousal symptoms. Imagine experiencing something traumatic related to your bleeding disorder and then having constant reminders of the event through ongoing medical interventions. It makes sense that you could be preoccupied by what happened to you, and become easily irritable, or even angry and reactive. Maybe you stop going to clinic visits or turn to substance use to avoid these feelings of distress.” Recognizing the impact of trauma, the stigma and barriers surrounding PTSD and its treatment is crucial.  “There is a link between childhood trauma exposure and development of substance use disorders later in life, so it’s critical to address and prevent trauma exposure as best we can in a medical setting.”

Amanda also reminds us that, “PTSD in bleeding disorders is complex. That’s why it is harder for providers to recognize some behaviors as trauma symptoms because they might differ from the traditional notion of PTSD that we think of in veterans like flashbacks and hypervigilance.” In bleeding disorders this can include avoidance of medical appointments, treatment, delaying contacting your provider, and sometimes use of substances to avoid challenging feelings in your body. This may also include intense fear of an upcoming procedure or appointment, worsening symptoms, and may be tied to symptoms in your body like a bleed, etc, which may trigger reactivity symptoms. 

Advocacy Organizations

References

Mayo Clinic (2022). Post-traumatic stress disorder (PTSD). Retrieved from https://www.mayoclinic.org/diseases- conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967

National Institute of Mental Health. (2024). Post-traumatic Stress Disorder. U.S. Department of Health and Human Services, National Institutes of Health. Retrieved from https://www.nimh.nih.gov/health/topics/post-traumatic- stress-disorder-ptsd

Stahl, A., Barnett, K., Wilson, A. K., Ren, S., Neuberg, D., Park, H. S., & Parnes, A. (2023). Posttraumatic stress disorder and posttraumatic stress symptoms among adults with hemophilia A and B. Research and practice in thrombosis and haemostasis, 7(8), 102241. https://doi.org/10.1016/j.rpth.2023.102241

Tetheredtoptsd (2024). Understanding the clinical course of PTSD. Retrieved from https://tetheredtoptsd.com/symptoms-and-diagnosis 

U.S. Department of Veteran Affairs (2022). PTSD Self-Screen. Retrieved from https://www.ptsd.va.gov/screen/