As a patient, the support and understanding has helped my family and me better understand and cope with the sudden limitations placed on my life. The Foundation members are thoughtful, compassionate, educated, up-to-date, and have their "finger on the pulse," of any/all new updates we, as sufferers of this disease, need to know. Additionally, the APS Foundation is an excellent resource for any aspect of APS -- the patient or physician both can utilize. I am thankful for the foundation and its hard work and dedication to the sufferers and the cause.
I've personally experienced the results of this organization in...
Being better able to cope with my diagnosis. Their counseling services and disease education helped my family understand the disease, and my limitations better. -- The same is true for my employer who was able to accommodate my "disability" by following my physician's recommendations. Without the APS Foundation, I would still be trying to convince my family and employer about my "invisible disease" and the limitations it places on me. With the APS Foundation's help, I am able to function in the world.
Ways to make it better...
If I had to make changes to this organization, I would...
Air a special on television: 20/20 and/or "60 Minutes." More media attention needs to happen. The more people who become aware, the easier it will be on those of us suffering from the disease. We "look" and "sound" "normal," the vast public needs to be educated about this disease. I would volunteer my story. It has tried to kill me twice, but I am still here!
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
How did you find this group?
On the internet.
What, if any, change in your life has this group encouraged?
To communicate with others suffering with the same disease, not to feel alone.
When was your last experience with this nonprofit?