Sunday, September 22, 2013

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.

Sunday, September 8, 2013

2013 Summer Update

The unofficial end of summer has come and gone and so has another checkup for me at the Johns Hopkins Scleroderma Center in Baltimore. I had my last checkup in February and it was time for another quick trip down to see Dr Wigley. I have to say that I don't recall there being less traffic on any other trip. Maybe it's because it was the day after Labor Day, but there was never a slow down heading there or heading back.

When I first went to Johns Hopkins in January 2007, after being diagnosed in the late spring of 2006, there were just 2 doctors in the practice and it was relatively quiet there . Now there are 5 doctors specializing in scleroderma and it's much busier, though they do a great job of getting things done efficiently and on time. I've been back on CellCept since Jan 2012 when my immune system seemed to be fighting me again instead of helping me. After my last visit in February the dosage was reduced from 3 pills twice a day to 2 pills twice a day and now we'll slowly reduce it over the next 3 months to 1 pill twice a day. So that means the medication continues to work and keep things in check like it's supposed to do. 

As Dr Wigley says with a smile, if I didn't have scleroderma I'd be in fantastic health! He's very pleased with my progress and we'll catch up again next March. Actually I'll see him and the other doctors later this month as they are hosting a Scleroderma Day at their facility and my wife & I will be driving down and attending. The Doctors will be speaking about the latest research and current advancements in treatments and we'll get to hear it all from them. 

After my appointment I gave 7 vials of blood for tests and research, made my next appointment for March and headed back on the road for an easy 3 hour drive home. 

I will follow up again with another post at the end of the month as long as we make it Scleroderma Day.

Stay healthy!