Sean was diagnosed after having eyelid swelling for a few weeks initially. It took an allergist, ENT, and finally a visit to his primary care physician to determine the cause. He was hospitalized a few times to get the edema under control. We have tried many medications, and he’s currently on tacrolimus and prednisone.
It has been a very bumpy road, but Sean is brave and takes it all in stride. As a family we eat healthier and live life to the fullest. This is a very frustrating disease; I am a medical professional, and it’s still hard for us. The ups and downs are tough, but we cherish every day and reach out for help! We are not alone in this struggle.