Thank you AAFA and all who contribute. Asthma and allergies are confusing and scary diseases, and facing it alone or with those who are not educated, experienced, or familiar is even scarier. I have had so much love and support since joining the community forum and receiving information and resources through your organization. Thank you!
Just a comment Patient Centered Care (the term) is also used for socialized medicine. If you are unlucky enough to have managed care...that is what it is. Less access to doctors and medicines. Everyone in the 'clinic' knows all about you...they can discuss you. I'm a privacy nut I don't care for sharing of my medical info without my permission. Just know this term is used for more things than one.
Thank you for your comment. The IOM (Institute of Medicine) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Thanks!
Thank you Lynda Mitchell! I developed food allergies at age 13 after a major intestinal surgery for ulcerative colitis. My son has had food allergies from at least age 3. I had difficulty handling my own food allergies when I was a teenager and then in college and had many ER visits as my reactions progressively got worse. So when my son had allergies, I found a lot of great information and printables online and love to show my son the pictures from events to show him that we are not alone...
Thank you @Shae! I really appreciate your comments and I'm glad KFA and AAFA have been of help to you and your family. I was and still am a firm believer in patient empowerment and being the best advocates for ourselves and our families with regard to our health care. Best wishes to you and thank you again! Lynda Linked In | Twitter
Patients were heard! The Graham-Cassidy bill is defeated. Pre-existing conditions, lifetime caps and other protections for patients are protected. Thank you to all of our advocates for sharing your stories and taking action. We hope the next step to improving our health care system puts patients’ needs front and center and that our leadership listens and fixes the items that are still barriers to care.
I spoke with a representative at AAFA in December 2018. Although she said that AAFA has brought the perspectives of people with dander-sensitive disabilities to the Department of Transportation (DOT) (because the airline industry doesn't have to honor our ADA rights), AAFA does not, from what I can locate, seem to be doing any serious, aggressive public campaigns on our behalf. You are correct that AAFA seems to be primarily focused on food allergies; they also hide behind arbitrary "air...
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