From Rare Disease Patient to Caregiver: How a Community Helped Me Advocate for My Husband

I was led to the Social Health site after a fury of excitement from RareDisease.net. I was finding a community of rare patients, caregivers, etc. like me. Sharing unique stories that we could all find commonalities in...how THRILLING!

That week though in my exciting search something changed. You see, I a “new bride” with a new outlook on life, noticed my husband was suddenly not himself. As a former nurse, I recognized his signs could be something autoimmune. So to Social Health I went. I thought I knew how to advocate...but when it came to my husband...I froze. The site actually guided us and prepared us to ask all of the correct questions for his appointments, such as what symptoms and when to document, and which ones to mention to which doctor. By the time we got to his rheumatologist she thought we might be looking at a rare disease and started treated, and ordered a complete workup! We are still on the road to the final diagnosis but he is so much better, and I am so thankful!