Community Stories
Community Stories
One recommendation from our Mental Health Task Force was to take action to remove the stigma surrounding mental health. To do so, we launched a video collection project where members of our community members share their stories addressing mental health.
Several community members agreed to share their story on camera. These stories will help raise awareness and increase conversation around mental health.
Mark's Story
Mark grew up before prophylactic treatment was available to treat his hemophilia. This left him with chronic pain and lack of mobility in his joints. Like most patients with severe hemophilia at the time, Mark also contracted HIV due to the contaminated medicine he received. In addition to the physical side effects he faced from his bleeding disorder, he also struggled with guilt after losing many friends to the virus.
Carolyn's Story
Carolyn has always lived with anxiety. Having a child with a bleeding disorder made this even more challenging. She asked for help and worked with her doctor to get the care she needed. She also found comfort by connecting with other moms in the bleeding disorders community who understood how she felt.
Mike's Story
Growing up with a bleeding disorder, Mike developed anxiety that worsened over time. Connecting with fellow blood brothers, being open with his wife, and, eventually talking to a therapist helped him learn to cope with his mental health challenges.
Jen's Story
Jen’s two boys have identical bleeding disorders. Their journey to being diagnosed was long, confusing and traumatizing. Unsure of what the road ahead would look like, she was left feeling isolated, scared and alone. Jen was struggling emotionally, and on top of that, she felt like she couldn’t show it or talk to anyone about it. After finding NEHA and connecting with others like her, she found the support she needed.
Manny's Story
Manny is from Puerto Rico and was diagnosed with hemophilia shortly after birth. While a bleeding disorder caused Manny many physical challenges growing up, it also brought invisible symptoms like pain, fatigue, anxiety, and depression. Now living in New England, Manny learned that escaping into the outdoors and talking to other bleeding disorder community members helped him develop critical coping strategies to accept his condition.
Kate's Story
Kate is a mom of three kids in Massachusetts. When her son was born with hemophilia after having no previous family history of a bleeding disorder, Kate got tested, and learned she, too, had hemophilia. She blamed herself for passing this condition on to her children. But once she connected with NEHA, she formed relationships with others that gave her the vital support, comfort and guidance she needed.