Is there any teens with Fava? What helped best with the pain?

Posted by kloeyy @kloeyy, Apr 10 3:22pm

I am an adolescent that recently got diagnosed with FAVA back in 2022-2023, I struggle with finding ways to ease my pain when my medicine doesn’t work.

I am very active in sports and in my day to day life, and some days it affects me more than others.

Any tips?

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John, Volunteer Mentor | @johnbishop | Apr 11 7:47pm

Welcome @kloeyy, I cannot imagine the struggles of a teen having such a rare condition as Fibro-Adipose Vascular Anomaly (FAVA). I did a search of Connect and did not find any members posting about the condition. I did find a site that you may find helpful if you have not already seen it - Project FAVA - https://www.projectfava.org/. They have a project to connect teens with other teens with FAVA which you might find really helpful.