What Is Sarcoidosis?
We lost Nicole on December 13, 2002. The official cause of her death was sepsis, but her underlying illness was sarcoidosis. The latter is fatal only in about 5% of all cases, but there was more going on with our baby than met the eye. The medication she was taking for the disease, methotrexate, will reduce a person’s immune system, which is exactly what we believe happened in Nicole’s case. Hence, she developed a severe infection (prefaced by a bout of thrush), and this turn of events proved catastrophic in the end.
An autopsy conducted at the Hospital at the University of Pennsylvania was inconclusive, and left us with more questions than answers, unfortunately. Paradoxically, there was NO sign of sarcoidosis in Nicole’s lungs, which was a pretty surprising revelation. My thanks forever to Dr. Gregory Tino of HUP, who handled this MOST difficult gathering with kindness and care.
Sarcoidosis is a VERY difficult condition to diagnose and treat — we actually couldn’t even figure out exactly what type of doctor we needed to get her to, as it affects many different parts of the body. We took her to Wills Eye Hospital initially (the first signs of trouble were “shadows” in her vision). The experts at Wills Eye actually consulted with colleagues at Children’s Hospital of Philadelphia, and their combined wisdom is what led to the initial diagnosis. We wound up seeing respiratory specialists, rheumatologists, and allergists, among others. No one could offer anything substantial in the end.
We would not for one second pretend to be experts on sarcoidosis. Hence, I am providing some links here to help you better understand this mysterious illness. I hope you find them interesting and helpful.