08/07/2019
"A's" mom shared their story with us. We're glad we could help!
A is now 11 and started getting regular fevers and other symptoms at age four. After many other diagnoses, loads of ED visits, and years of being told “it might be stress” - she received the diagnosis of Behcet’s Disease and USAID at the age of ten. Untreated Behcet’s/USAID looks like regular high fevers, GI pain and wasting, unremitting ulceration of the nose/mouth/GI tract, inability to absorb food, diarrhea, headaches, joint pain, eye pain and vision loss, fatigue, weakness, elevated CRP/SED rates, hair loss, and missing out on childhood.
The Autoinflammatory Alliance gave me the tools needed to push for a proper diagnosis and treatment team for my daughter.
Hope means to me that with increased awareness no one ever feels like they have to do this alone and diagnoses happen more quickly.
(USAID = undifferentiated systemic autoinflammatory disease)
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