MEET-UP

Having cyberfriends is great and even greater is when there is an opportunity to meet some of them in person. This happened on March 08, 2010 in Portland Oregon. There is a support group here because of the efforts of Grace and the other current members are Pam, Pauline, Geri, Marge, Michele Sheila, Sheryl and myself. Others have had previous opportunities to meet but this was my first time since moving here. The members live in various locations over the state and near environs.

Back in November of 2007 I met others with these diseases for the first time when I attended a national patients conference at National Jewish Hospital in Denver. Because of our shared symptoms and the uniqueness of the pulmonary features, instant bonding happens. We've all been in the trenches so to speak and so these meet-ups are so memorable.

So it was this time. Unfortunately and predictably, not everyone could attend so another day I hope to be able to see the absentees. We had a two hour session of sharing our experiences with the medical history of each and swapped information about how much variation there is in the medical services field about how to handle this complex of diseases.

Pulmonary mycobacterial disease has long been ignored and only when a variation, disseminated (or non-pulmonary) NTM began to be seen frequently in the HIV-AIDS population did the medical attention get more focused. In January 2007 for the first time in fifteen years the IDS/ATS jointly published a paper updating the knowledge about pulmonary mycobacterial diseases. Let us hope that there will be more attention and greater knowledge acquired so that better treatment options will become available.