In May 2012, I presented the story of my diagnosis, symptoms and the emotional impact of living with the fatal diagnosis of an interstitial lung disease to the American Thoracic Society's international conference in San Francisco. Yesterday, I received an e-mail from ATS announcing that my story had been selected to be included in a booklet to be distributed to different groups. Here is a portion of that e-mail:
The idea behind this booklet is to take some of the stirring, moving, inspiring stories delivered by patient speakers at our present and past ATS international conferences and package some of this material in an easy-to-read booklet and make it available for distribution to PIOs, patient support groups, PAR members and their extended networks, ATS members, legislators, attendees at ATS meetings, at chapter meetings, and perhaps the general public as the ATS continues to do more and more outreach.
The ATS is trying to create new alliances with patients and patient advocacy groups and we think this will be one additional resource that we can use to make inroads to those people who oftentimes don’t know even know what “thoracic” means or how much work the ATS and its PAR partners have done and continues to do on behalf of lung and airway disease patients.
The booklet will have a foreword, a preface, at least one patient story on each major lung disease, photos of the patient, and quick facts on each of these diseases as a sidebar to each story.
Your story was chosen as one we’d like to include. I have attached your speech that we have on file. You may send an updated or edited version to us as well. If you are ok with the current version, we will edit the current file and send you an edited-for-print draft of the story shortly.
I am thrilled to be included in this booklet. I guess I will be representing Hypersensitivity Pneumonitis. I just sent a slightly revised speech to them this morning.
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