My dad found out he had Hereditary Angioedema when he was in his 30’s. Me and my twin brother were around 7 and my sister around 2 at the time.
The 3 of us were then tested and we all 3 have the disorder.
I was in the clinical trial for Cinryze and when it became fda approved I was put on it regularly.
Unfortunately I couldn’t talk my twin brother into going to the doctor and get the medication and about 5 years ago he died with a throat swell.