June 9, 2010
In November 2009, I had an incidential finding of cysts on my lungs. On December 23, 2009, following a lung biopsy the week before, the diagnosis was confirmed - I had LAM (or otherwise known as lymphangioleiomyomatosis). Since it is considered a rare disease, there was not a lot of information available and what was available, was not very positive. My pulmonologist referred me to the LAM Foundation the same day I received the official diagnosis. When I called on 12/23 to speak to someone at TLF, I was greeted by Sally Lamb. Within a week, I received an amazing amount of materials and information. The materials came in a two - three step process which was very helpful. Otherwise, I might have tried reading everything which would have only overwhelmed me more. Even after receiving the materials, people at The Lam Foundation are always available to me for questions that might rise or just to listen when I'm having a difficult day. They also have a LISTSERV that's available 24/7 for all patients which provides the opportunity to speak to others with the same disease. The LAM Foundation is amazing group of people and I feel very fortunate to have TLF available to me. The Executive Director even told us at LAMposium that she would happily accept losing her job if it meant that a cure was found and the foundation was no longer needed.
I've personally experienced the results of this organization in...
just the amount of education and care that I have received since being diagnosed with LAM in December 2009.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
MY ROLE:Client Served & I received assistance following a diagnosis of LAM in 12/2009.