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4 days ago1 min read
Jan 121 min read
Advocate
Happy 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 read
Research
After being diagnosed with Gorham-Stout Disease I have done extensive research. My research has led me too many medical reports and terms...
Jan 51 min read
Jan 11 min read
Dec 26, 20241 min read
Dec 25, 20241 min read
Dec 19, 20241 min read
Support
Last night I went to my first support group. I was welcomed, laughed, and cried. It was long overdue to participate with other people at...
Dec 13, 20241 min read
Dec 9, 20241 min read
Dec 7, 20240 min read
Dec 6, 20241 min read
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