My name is Julie Steedman and I have been battling Sarcoidosis for the past 9 years.
Sarcoidosis is a chronic disease of unknown cause marked by the formation of nodules in the lungs,liver,heart,brain,lymph nodes,and salivary glands. 1/3 of the people who have Sarcoidosis don't know they have. 1/3 of the people get diagnosed and treated and it goes "away". And the final 1/3 of the people who have sarcoidosis have chronic symptoms and is very difficult to treat.
My story began 9 years ago, when I was working as a pediatric nurse. It started with my left ankle being red/purple in color, swollen and very painful. Then it moved to the other ankle which made it very difficultto walk. Joint pain and left sided pain began and it was very intense.
I went to the doctors and several tests were ran. I was referred to a rheumatlogist who ran more tests. His thought was that I had lymphoma or Sarcoidosis. I had a biopsy within a week and my diagnosis was sarcoidosis and the the adventure began.
I have been on every conventional medication and have seen many specialists over the past 9 years who have not been able to control the disease.
About 2 years ago I found the right rheumatologist, along with the right specialist who was willing to figure out the right treatment for me. Chemotherapy began with low doses and increase to very high doses. I lost my hair, the pain was still pretty bad for about the first 6-8 months. After a year on chemo my oncologist and I decided that the chemo needed to end with the fevers that I was getting and the consistant low white count. Plus, the risk of staying on the chemo would increase my chance later in life of cancer.
We began to research my options and the only options that I have not tried was stem cell transplant. This is very scary, but not being able to breathe sometimes andthe pain there is really no choice. So,in March 2014 my journeybegan with a specialist in Chicago. This is experimental and I would be the first one with Sarcoidosis to have this done. Other autoimmune dieseases have been very successful and that is your goal with my stem cell transplant.
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