I’m jumping in here, have not rsvp’d here, mostly with Katemn on another site. I had symptoms of MAC since think 2009, but wasn’t diagnosed until 2011, got the old asthma diagnosis. Was treated with the big three for 5 years and have been culture free for 2 years, off meds one year.
The reason for this diatribe is your mention of a registry. In my vast reading I read about the COPD Registry it has included
MAC/?NTM patients. While in Midwest was SOO fortunate to get an appointment to with Dr. Aksamit and they enrolled me in their data base. I have another rare disorder, and they have formed a strong registry. The disorder is fibromuscular dysplasia, quite interesting (fmdsa.org). A patient, Pam Mace, is the executive director, and it has become an international organization. Have other cardiac issue so don’t have the energy to pursue further information re starting a registry, but the executive director can be reached at the site if anyone has the energy.
Love to all, Linda