Unheard Stories

 In Mental Health, NYCHC Events, Teens / Young Adults, VWD, Women

As people with a rare bleeding disorder, many in our community already share a lot in common. You sometimes feel different, left out, or unheard. Having a bleeding disorder has probably caused unique challenges or situations in your life that people outside of our community may struggle to understand. We want to help you speak up and share your story.

During these events, we provided the virtual safe space where community members like you can shared their story. Speakers have roughly 5 to 10 minutes to share any story they’d like. Sharing these stories can be a powerful experience for both the speaker, and the audience listening to the story.

A Look Back at the Stories…


Will used to blame his parents for having hemophilia and for the limitations he had to take in order to stay safe. Then, he took part in Hemophilia: The Musical and his outlook on life changed dramatically.

His story focused on how this experience helped him discover a love of performing arts and how he came to accept who he is as a person with a bleeding disorder. 


Three years ago, after an infusion, Nikki almost died. She has no memory of 6 days of her life. 

Her story centers around the steps she took to figure out what caused this to happen, and what important lesson she learned as a result.


Two people left a lasting impact on Marty. One is a nurse and the other is his blood brother. 

By sharing his stories, Marty wanted to tell us how he would like to be remembered and why.


Eliot’s story focused on finding a light within himself and how a horse in a pocketbook could mean so much. Click below to watch his story now!


Miguel is an extrovert who loves to express himself through spoken languages. His story focused on how he found his “community” during the pandemic when we were unable to gather in-person. Watch his story below!

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