The picture on the left shows Dr. Andrew Colin and I during my stay at Boston Children's after lung surgery in April  2000. He was  my pulmonologist for many years and provided me with a level of confidence that allows me to feel better about my condition and the constant medical complications that challenged me everyday while I went to Boston Children's Hospital.  It was with Dr. Colin's help that my Churg Strauss Vasculitis diagnosis was made and that my treatment began.

Treatment After my lung surgery at Boston Children's Hospital I was prescribed 120 mg of Prednisone a day to fight off the disease in my system. As you can see from the comparison picture -- it was a depressing time-- I gained  over ninty pounds while on the prednisone. This complication of treatment was a huge mental and physical challenge to overcome because of my past experiences as an athlete in soccer, basketball and track. As you might imagine, this was a very hard time to get through and my emotions ran hot and cold. I was not easy to live with. Neurophaty  / Fainting In August of 2000, I was looking forward to my senior year in high school.  Howeveer, two new complications developed. First, I would be walking and then all of a sudden I would faint and drop to the floor like a lead ball.  this was happening two to three times a day and eventually I ended up in a wheel chair.  There were no warning signs of these fainting spells and one particulair issue was that I would fall forward each time and I would just drop.   Many times getting bruises or cuts on my body from the fall.  Secondly, I developed neuropathey, and was losing feeling in my legs and hands.  There was much speculation on what was causing these issues and my methotraxate was increased to a maximun dose and both conditiions went away in forty-eight hours.

Cleveland Clinic  -  Ohio

In November of 2001 I traveled, with my parents, to the Cleveland Clinic where I was seen by Dr. Gary Hoffman, a Rheumatologist and researcher on Churg Strauss Syndrome. He was able to confirm the diagnosis given at  Boston Children's  and has consulted with my Massachusetts doctors several times since. It is always hopeful to know that there are people out there researching for cures to these kinds of diseases.

Entering College  -  Springfield College

In August of 2002 I began to further my education at Springfield College. I had a successful first couple of months, but then the fainting returned in November of 2002. I had to take a leave from college early and return home, taking incompletes in many of my classes.  The fainting was difficult to figure out and control, even for the doctors. They put me through several tests and finally decided upon a diagnosis of Neuorcardiogenic Syncope.

EEG This is a picture of one of the tests I had to have done to diagnose my fainting spells, it's called an EEG. If we painted my face blue, I would look like a smurf. Since the fainting continued during all these tests, I was again put into a wheelchair, because with each fall my bruises and cuts were getting worse.  The good news was I passed the brain tests.  In March of 2005 I received another lung wedge operation on my other lung.

SHRINERS HOSPITAL  FOR CHILDREN    SPRINGFIELD,MA Dr. Deborah Rothman is shown on the left.  She is a Pediatric Rheumotologist at Shriners Hospital For Children in Springfield, Massachusetts. On the other side of me is her assistant Kristin Smith.  One of the realities of the treatment of my type disease is the transition from your Childhood doctor teams to the adult doctors you must transfer to. I was extremely lucky to have a Pediatric Rheumatologist so close to home.  I have developed a sincere affection for so many of the doctors I have had to deal with because of the different ways it effects your body. She provided me with the support I so desparately needed during the highs and lows of my treatment. I was very lucky to have a Pediatric Rheumatologist so close to my home.  We later found out at different conferences we attended that this country has a shortage of Pediatric Rheumotologists in many sections of the United States.  I was extemely lucky to have one so close to where I lived. The world keeps turning, one day at a time. During the   summer I again relapsed with Churg-Strauss Syndrome. The   doctors decided to put me  on azathoripine which I had a bad reaction to. I lost alot of my hair and finally decided that instead of huge pactches of baldness, I would have to shave the rest of it off. So this is what I looked like  for a while.  But I went back to visit Dr. Merkel and he agreed it wasn't the best look for me. So I started to buy bandanas and also bought a real hair wig so I could have hair everyday.    Here is Dr. Merkel admiring one of my new bandanas. It was really important to have hair as a bride's maid at  my sister's wedding. In the picture you can tell I just started the prednisone because my cheeks are not so puffy. But in the picture of Dr. Merkel and I you can see the cheeks starting to show through. It looks like I'm beginning to store nuts for winter! Rituxan I began taking Rituxan on the Wednesday before Thanksgiving in 2007.  I had a reaction to it the first dose and medical staff had to stop it short. I had to come back for another attempt two weeks later and then followed that up two weeks after that.  Left is a picture of me before they started the infusion and then 2 hours later when I was in the middle of the infusion. I also received an IV of prednisone to help me feel better. The IV suite  in the Moakley Building on the Boston Medical Center Campus is new. The staff has been great to me there!