Living with a Mysterious Illness: Scleroderma

Living with a Mysterious Illness: Scleroderma By Kathleen Hoffman, PhD, MSPH Unless you’re a specialist, you might not recognize a chronic disease that is named for its effect on the skin -- but might not appear there. It’s scleroderma. In fact, the symptoms vary greatly for each person: From 75-90% of patients have GI symptoms with it; it can be visible or invisible; it can come and go or last a lifetime; and can be mild or life threatening. The cause is unknown and it might appear at any age., It affects about 300,000 people in the [...]

Video Vignettes: Through Their Own Eyes: Systemic Scleroderma

Video Vignettes: Through Their Own Eyes: Systemic Scleroderma Approximately 300,000 people in the US live with scleroderma; about 100,000 of those people live with a form called systemic scleroderma.1 Scleroderma is a connective tissue disorder involving the fibrous protein called collagen that is found in structures like cartilage, ligaments and tendons, throughout the body.  People with  scleroderma make too much collagen and it builds up in tissues.  Often one of the first symptoms of scleroderma is hardening of the skin. The cause of scleroderma is unknown and there is no cure.  It can occur as a localized [...]

How Does Pharma Learn To Speak “Patient”?

How Does Pharma Learn To Speak “Patient”? After passage of the 21st Century Cures Act in December 2016, speaking “patient,” is more essential than ever. What does speaking “patient” mean? Speaking “patient” means truly understanding and interpreting what patients are saying. That’s because the Act promotes “incorporating the patient perspective” more intentionally and systematically throughout the drug and device development process. As Former FDA Commissioner Robert Califf explains, “This new law rightly recognizes that patients should play an essential role in the development of drugs and devices to diagnose and treat their disease, since patients [...]