Inspire (http://corp.inspire.com) is a Princeton, NJ-based company that builds online peer-to-peer communities for patients and caregivers, in partnership with national patient advocacy organizations, and helps life science organizations connect with these highly engaged populations. Find us on Twitter at https://twitter.com/teaminspire.
To those suffering from chronic illnesses, “But you don’t look sick” is one of the most invalidating comments you could make. It may be intended as a compliment, but ultimately this statement questions how sick a person could be based on their physical appearance - If you do not look sick, then you cannot possibly be as sick as you say. Your assurance does not make the illness go away; it does not make it any easier to be sick. So, instead of questioning the illness, offer support to your friend/family member/coworker and let them know that they don’t have to go at it alone.
Diagnosing a person with lupus can be a long and very difficult process for many people with the disease. In our recent Lupus Research Update, we spoke with Dr. Alana Levine about her approach to diagnosing and treating people with lupus. Dr. Levine is a rheumatologist at the Hospital for Special Surgery (HSS) in New York City, and as a clinician, Dr. Levine references the research that has propelled treatment for those with lupus, and specifically notes work by colleagues at HSS and ALR-funded researchers Drs. Mary K. Crow and Jane Salmon.
Kendra Gottsleben’s life is defined by her positive outlook and success in overcoming obstacles, not MPS - the rare genetic condition she was born with. She is a 2010 Augustana College graduate with a bachelor’s degree in sociology and psychology. http://kendragottsleben.com #diabilityrights #raredisease #rarePOV #MPS #Mucopolysaccharidosis #disabilityadvocate #epatient #MaroteauxLamy
Julie Flygare, JD is the founder of Project Sleep, a leading narcolepsy spokesperson, published author, blogger and runner diagnosed with narcolepsy and cataplexy in 2007. Upon recognizing that many doctors were unfamiliar with narcolepsy, Julie collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on her story now taught to all Harvard Medical School students. http://julieflygare.com #narcolepsy #cataplexy #narcolepsyawareness #narcolepsysupport #epatient #sleepresearch