Jan 121 min readAdvocateHappy Sunday! I will be visiting Washington, D.C. to attend this event hosted by EveryLife Foundation for Rare Diseases to advocate for...
Jan 111 min readResearchAfter being diagnosed with Gorham-Stout Disease I have done extensive research. My research has led me too many medical reports and terms...
Dec 19, 20241 min readSupportLast night I went to my first support group. I was welcomed, laughed, and cried. It was long overdue to participate with other people at...