Behold! That's when thee online social networks come in to save the day! Twitter and Facebook always help keep me updated on the newest Lupus updates, as well as with friends and family. It just so happens one particular day while I was heading home from seeing my Rheumatologist; I received a tweet from @LupusNY about a new way to support Lupus research.
@LupusNY spoke about SisSLE-The Lupus Sister Research Study which is a nationwide study that is funded by The National Institutes of Health (NIH) and its division, National Institute for Allergy and Infectious Disease (NIAID).
To be honest I did not feel comfortable having my sisters poked and prodded as I have been for the past several months, however they gushed and practically requested all the information from the Research Institute themselves! *Chuckles* Here I stand; proud to say I have successfully sent out my blood kit to the SiSLE Lupus Research Sister Study. My sisters and I are now going through the telephone interviews, and email follow-ups. We are proud to say are taking such powerful important steps to finding a cure for Lupus. Our hope is if not to save my life, perhaps a future generation of people living with Lupus. I never was more assured of the love my sisters have for me until this day.
My Sisters Nicole, *Me*, and Rebekah
The life of a "Lupie" is not an easy one, but with the loving support of family & friends we are strong beyond measure!
The criteria to apply to SisSLE- The Lupus Research Sister Study is as follows:
We are enrolling 400 blood-related sisters (including half-sisters):
- One sister with a confirmed diagnosis of lupus and one sister that does not have lupus.
- If there is more than one sister without lupus, all may participate.
|Criteria for sister with lupus: |
Confirmed diagnosis of Lupus (SLE), with disease onset between the ages of 10 and 35 years
|Criteria for sister(s) without lupus: |
Currently between the ages of 10 and 35
What are participants asked to do?Each sister, both affected and unaffected, is asked to:
- take part in telephone interview with a research nurse
- read and sign a consent to participate in the study : sister with lupus, sister without lupus
- complete a questionnaire : sister with lupus, sister without lupus
- provide an initial blood sample
- agree to be contacted for study follow-up
The blood sample may be collected at The Feinstein Institute for Medical Research in Manhasset, NY; at a laboratory near your home; or by your personal physician.
To Participate in this amazing Lupus Research Sister Study please contact:
SisSLE Research Study
The Feinstein Institute for Medical Research
North Shore-LIJ Health System
350 Community Drive
Manhasset, NY 11030.
Call a Research Nurse:
This study of lupus sisters will provide important insights into the lupus disease process and will hopefully lead to improved treatments and diagnosis! Such a simple step can save a future life, won't you help?