BE COUNTED! It's Time for Answers on Lupus in NYC

Ask Your Doctor About the Just-Launched Manhattan Lupus Surveillance Program

Manhattan Lupus Surveillance Program

Thanks to a collaborative between New York University and the New York City Department of Health and Mental Hygiene, the number of people with systemic lupus (prevalence) and number of new cases (incidence) of lupus in Manhattan will finally be properly measured.

How Many New Yorkers have lupus? How old are they?
What race/ethnicity? What complications are they hit with?


Are you one of them?
If so, be sure to let your doctor know that you want to BE COUNTED! in the Manhattan Lupus Surveillance Program so that we can all raise lupus awareness—and get the data down right so that services and care go to the New Yorkers who need them.

"These questions must be answered so that we can see just how many individuals in Manhattan have lupus, and get an idea of how many people are diagnosed with lupus in a given year,” said New York University's Jill Buyon, MD, one of the city's leading lupus doctors.

"Just like with the U.S. Census, concrete facts can help us all in more effectively raising awareness and educating the community, researchers, as well as health care providers and hospitals about this often very difficult chronic disease,” she said.

Be Counted (Anonymously)!

"We hope people with lupus will ask their doctors (their rheumatologists, dermatologists, nephrologists) to include their case in the count because the more of them that know about it, the more accurate we can be in getting care to those who need it," said NYU's Peter Izmirly, MD.

Dr. Izmirly got his first major grant to study lupus from the S.L.E. Lupus Foundation and is now spearheading the survey in close collaboration with Dr. Buyon.

The Centers for Disease Control (CDC) is funding the collaborative study, and results will likely be available in 2014.

Additional sites developing these registries are located in California, Michigan, and Georgia, and at various locations through the Indian Health Service.

“We've been taking care of New Yorkers with lupus for over 40 years," said S.L.E. Lupus Foundation Executive Director Margaret D. Dowd. "Our offices here near Penn Station as well as our website and facebook pages buzz with activity, from support groups to educational programs, awareness campaigns, and more."

"With the Manhattan Lupus Surveillance Program, we'll learn even more about our New Yorkers with lupus,” Dowd said. “So we hope everyone with lupus will ask for it...to BE COUNTED!"
 

Comments

Re: How can you help us in Africa?

I live in Tanzania. I have read much of the information contained in your page about Lupus. As you are aware, Lupus requires constant follwo w up with physician, lab tests, medication etc. many peopl ecannot afford, is there a way the foundation can also help those outside America. I was diagnosed in July 2010, It took three weeks for doctors to really diagnose my problem, by then it is acute and was hospitalized for two weeks. I am doing fairly good but the strories I get from by physician and therapist is that many people are suffering. Please help.

Dear, I live in Jordan and I

Dear,
I live in Jordan and I have been diagnosed with lupus since 23 years and I am 30 now... I doing more than good, I have normal life.... I go to gym, work, and i feel that i am healthier than others.... you have to take care of your self, understand your problem and things will be more than fine....

lupus is not easy disease but if you understand it.... it will be like life time flue....

best wishes