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Lift Every Voice!

by Dr. Donna Atherton, Editor-in-Chief

In a recent phone call with a parent of an adult male who expressed interest in volunteering and becoming a community ambassador with IAHSN. Initially, everything was great, she was eager and excited about advocating on behalf of hidradenitis suppurativa. But the next day I received an email that she needed to speak to her adult son before moving forward with her interest. She ask that I not post anything she had sent me (photos and a few sentences about why she wanted to be a community ambassador). This caregiver was very adamant about giving IAHSN her approval before posting anything.   I was a bit confused about waiting for approval, because she had sent me the information.  Of course I agreed to her request, and would never post anything that made a person feel uncomfortable or in her case of experiencing apprehension.  But why is this?  Why are men still hesitant about speaking out about symptoms of HS or in this parent’s case allowing her to speak about their experience as a caregiver.   This population (men) are so silenced about their condition and underrepresented in the HS community.  Men tend to be more reserved than women who show their wounds on social media and have a voice in the HS community.  Caregivers of adult children are also often silenced, their perspective as caregivers are so valuable, and their voices also needed to be heard. 

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