Patient Stories

• Share Your Story
• Patient Stories Archive

Latest Stories

• Feb Royce's Story
• Jan Chris's Story
• Dec Debi's Story
• Nov Marsha's Story
• Nov Elaine's Story
• More Stories

Share Your Story

We are delighted that you would like to share your HAE story. Every HAE story is unique and valuable.

At least one HAE story will be shared each month on the US HAEA web site. Please be aware that not every story may be chosen to appear on the website.

• All submitters will be asked to review and approve their story before it goes “live” on the web site.
• All submitters asked to provide their consent to have the story appear on the web site – a simple email providing consent is sufficient.
• You may choose to include or not to include a photo (headshot only) of yourself to accompany your story.
• All stories, photos, and signed forms will be permanently archived with the US HAEA.
• Your story must be 500 words or less.

Please include these basic facts:

• Name and age
• Hometown
• Career, if any or degree study, if you are a student
• Please include this information about your HAE journey:
  • How old were you when you found out you had HAE?
  • How were you diagnosed with HAE?
  • What are some of the challenges you encountered while living with HAE?
  • How has your life changed now that you have medication for your HAE?

or

• What has your experience been in trying to obtain medication?
• What are your personal/career goals – before/after access to medication?

If you wish, you may want to mention any role played by the US HAEA in your story.

Please submit your story to info@haea.org.

If you have any questions, please email us at info@haea.org and thank you for sharing your personal HAE story.