Scleroderma Day 2013

My wife and I were able to attend Scleroderma Day hosted at Johns Hopkins. It started out with Dr Wigley introducing himself - "My name is Dr Frederick Wigley and I was put on this earth to cure scleroderma."

The first part of the event were presentations regarding the Johns Hopkins Scleroderma Center including a brief chronology which includes a couple of doctors in 1980 and 1 nurse handling everything, including answering the phone. Today there are many doctors, nurses and other staff handling what was reported as 6 new patient request calls coming in each day. The center now takes on about 200 new patients each year.

One of the presentations focused on what happens after the patients who donate blood leave the office and all the work that occurs by the research team associated with the center. The team tries to evaluate the blood as soon as possible where it best represents its state within the body. They showed some of the expensive machines used to analyze blood.

The second part of the event was a Q&A session with Dr Wigley and 8 other doctors from Johns Hopkins that specialize in rheumatology, pulmonology, dermatology, psychiatry. What became evident is the extensive collaboration that occurs across treatment of patients and ongoing research throughout the Johns Hopkins medical community. Each of the doctors on the panel referenced research in their specific areas related to scleroderma such as analysis of pulmonary hypertension medications and the differences in effectiveness on scleroderma patients.

The event went quick but it was worthwhile and great to hear about everything that is going on as well as how some things work behind that scenes that we as patients wouldn't normally see. Thank you Dr Wigley and the rest of the Scleroderma Center doctors & staff as well as the other JH doctors that are all working toward finding a cure for scleroderma. I hope my wife and I can attend next years event and if you have the opportunity, and don't need to travel too far, maybe you can make it too.