CAH Posts

As we gear up for Summer Adrenal Camp Week at the beautiful Painted Turtle Camp in Lake Hughes, here are some thoughts on the importance of medical camp for children with CAH: Building a Supportive Community - Peer-to-peer support can be empowering and normalizing for children with a lifelong condition. Developing strong friendships can build … Continue reading Summer Camp: Empowering Kids with Adrenal Insufficiency

It seemed impossible for an emergency rescue medication needed by all patients with Adrenal Insufficiency to go into shortage. Enter: Natural Disaster! A tornado hits the only Act-o-vial factory in the U.S. We experience a full-out national shortage of Act-o-vial for nearly a year. What lessons can we take from the great Act-o-vial Shortage of … Continue reading Lessons from the Act-o-vial Shortage of 2023

We had our first Back To School support group meeting on Zoom in August 2022. Our center discussed the CAH-specific 504 Plan and IEP templates that list accommodations that we regard as useful for students with CAH. We have been encouraging parents to consider requesting a 504 Plan to be created at their school.

We are excited to start up our newest CAH Support Group for Spanish-speaking parents. In LA we serve a patient population that is 60-70% Hispanic. Parents can be bilingual or monolingual, Spanish-speakers. Families can be faced with challenges that range from access to education, support events, and culturally-specific factors. Our first event is on Zoom … Continue reading Spanish CAH Support Group

Yes, there is a shortage. Teva is the manufacturer of the "yellow pill" and their production is on hold until June. Impax is the manufacturer of the "white pill" (you thought it couldn't get worse than having to take a white fludro pill) which was doing a fine job pinch-hitting until supplies ran short. That … Continue reading Fludrocortisone Shortage