Nih clinical trial visit

Today we are at nih following up with addysons team since putting her back on the clinical trial medications. They are planning to do a blood drawl and her team has pulled her full genome sequencing and are going through it line by line to look for anything. They don’t think Hopkins missed anything but they want to be sure. They said to keep an eye on her for cyclic neutropenia. We are getting more of her clinical trial meds and the injectable Anakinra for during a flare. Nih and Hopkins both believe all her issues (heart, lung, missing tear glands, fevers and maybe even Gi) are genetically linked but until they find another addyson there will continue to be a lot of unknowns. I told her Nih Dr we are going to Boston for motility and she told us she studied there and that it is the best place to go for motility issues. She reassured me that addyson really does need to go to Boston!

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