We are a team of researchers from Columbia University Medical Center in New York. We are conducting an online survey. The topic of the survey is precision medicine research. Precision medicine research looks at a person’s genetics (what they inherit from their families), their environment, and lifestyle. This type of research can help preventing and diagnosing diseases and developing new treatments.
It is important that we learn what people with disabilities think about precision medicine research. We are NOT asking you to volunteer for precision medicine research. We are asking you to take our online Survey because you may have one of the following:
- Blindness or low vision
- Deafness or hard of hearing
- Physical disability
- Autism
- Intellectual or developmental disability
- Learning disability
- Mental health or psychosocial disability
The Survey asks what you think about precision medicine research, and for some information about you. Your answers are valuable to us and will help researchers design the proposed precision medicine study. You will receive a $25 gift card if you complete the Survey.
The Survey is in English, Spanish and American Sign Language (ASL). It can be completed with accessibility programs like screen readers. You can also ask another person to help you. It may take up to 25 minutes to finish the Survey. You can also stop at any time.
Your answers will not be linked to your name, and the researchers will not know your identity. If you have questions about the survey, please contact:
- Maya Sabatello, LLB, PhD, at [email protected]; 646-774- 8616
- Paul Appelbaum, MD, at [email protected]; 646-774-8630
Thank you very much for considering our request.
Sincerely,
Maya Sabatello, LLB, PhD and Paul S. Appelbaum, MD, Columbia University
Hi, I am a person with a severe disability, Chronic Lyme Disease, that has fallen through the cracks of the medical community. Best guess is that I have had Lyme disease for 22+ years. I finally got a correct diagnosis about 6 years ago. I was diagnosed by a naturopath, who pricked my finger and put a drop of blood on a slide under a microscope, hooked to a monitor. You could clearly see the spirochetes. He treated me for almost 2 years with supplements, with little to no improvement. I turned to western medicine because my pain got so bad. They performed the western medicine blood tests, which came back negative. From my research, this is very common for people that have had it this long. When I told my primary care he said “I don’t know anything about Lyme.” I continued seeing him trying to get help. Sometime later I had an ER visit. The doctor told me “Dr. xxxx, needs to be doing more for you”. I relayed that to my PA, but nothing more was ever done. I couldn’t get my pain addressed because I wasn’t positive or elisa or western blot. Even after a referral to a doctor to address adrenal fatigue wrote on the bottom or her report “I believe Julie is losing so much weight because she is in pain”. I have struggled so hard to try to find help. Just a few months ago I was in the er at Borgess Hospital in Kalamazoo Michigan. The supervising physician came to me and said “there is not such thing as lyme disease, the CDC does not recognize it and besides we don’t even have ticks in Michigan” Really. How can Arizona open up and say they recognize lyme and Michigan be so ignorant. Do doctors go to school, get out and are never updated?? And why can doctors belittle people so bad?? But now I am stuck. My health has declined to the point I am basically housebound. I am going to have to have all my teeth pulled as the lyme is in my mouth as well, and NOBODY understands what I am dealing with. I have gone from a happy, social, loving and giving individual who worked hard as a manager at a big corporation to someone who can no longer manage their life I am isolated as my family has turned away from me. I am not able to get any kind of disabled or senior service as they say I make too much money. Probably nothing will come of this, but I feel better just to tell my story. Maybe it will help someone else.