I thought receiving an HAE diagnosis after years of wondering what was wrong with me would instantaneously make me feel less alone. But that wasn’t the case for me.
As a young college student with HAE, I would be out with friends when an HAE attack would strike. I remember playing sand volleyball on a warm summer evening with a large group of friends, and suddenly feeling incredibly ill. I felt trapped and embarrassed in the outdoor bathroom—hot and terrified as I hoped the attack would pass. What would I tell everyone when they began to wonder what was taking me so long? Could they hear me getting sick? Would anyone possibly understand?
It took some time, but what finally helped me escape the isolation was:
- Learning more about myself and my HAE from my doctors
- Reaching out to the Hereditary Angioedema Association (HAEA), joining social media groups, and attending national conferences
- Attending Patient to Patient Programs, where I learned about treatment options and connected with others with HAE. We shared stories and strategies for coping with HAE, helping me find a community in my area. You can learn more about these events here.
Because of these things, I slowly learned to be open and honest, and to provide my friends and family members with appropriate information about HAE, with the hope that they could better support me.
Today, my friends, who I used to hide my HAE from, know all about my illness and love me nonetheless. My doctors and nurses also provide invaluable support, helping me with both my physical and emotional health.
I encourage you to reach out to others on similar journeys. At Firazyr.com, you can find information on Shire’s You, ME & HAE program, where you can connect with other people with HAE. There are people online and in the community waiting to help.
[FIRAZYR® (icatibant injection) is a medicine used to treat acute attacks of HAE in adults 18 years of age and older.]
How have you dealt with feelings of isolation? Tell me in a comment below!
The journey to an HAE diagnosis differs for everyone. Hear from Shire's Patient Ambassadors at an event near you. Click here for more information.