I am Paula DeCarlo and have been dealing with an auto-Immune disease since I was a child with nose bleeds, bruising and often very sick. By age 12, the bruises would encompass my entire thigh. I began to have uncontrollable nosebleeds and extreme fatigue. Finally, my parents were directed to a Hematologist in Pittsburgh, Pennsylvania who emergently hospitalized me because my platelets were dangerously low and immediately ordered a bone marrow biopsy. The findings were normal out of the marrow however, my platelets were being destroyed by my immune system which had
an extremely high white blood
cell count. I was given extremely high doses of intravenous (IV) steroids during my hospital admission which lasted for weeks until the platelets increased. I was later sent home on 80-100mgs of Prednisone, a steroid. Unfortunately, when my dose was decreased, after months; my platelets dropped below the last low. I was rushed to the hospital and IV steroids were given to prep me for an emergent spleen removal surgery. My spleen was 4 times larger than normal size from the antigen-antibody bonds.
Later, around age 17, I began to go numb all over and my white blood cell count was extremely high. Then, I began seizing again! Back to Mercy Hospital in Pittsburgh. After a multitude of spinal taps to remove the pressure on my brain, I entered a coma for 8 days; my immune system was
attacking my spinal cord and brain (Meningitis with Encephalitis) and I had a fever that was over 106 degrees Fahrenheit. After another month in the
hospital , I went home. This is when my hematologist, in 1985, contacted Mayo Clinic about my disease.
Mixed connective tissue disease (MCTD) was my diagnosis which was a medical term for overlapping multiple diseases. Severe bowel issues began which included bloody stools from inflammation and severe constipation, protein in the urine (Keytones) ...everything was inflamed. I suffered through the years from multiple surgeries to hematomas removed in my uterus to an appendectomy to lung biopsies, two back surgeries, lipomas in my uterus and being on and off steroids for 38 years.
My second back surgery in 2008 was a botched surgery in which I coded (my heart stopped beating and I needed CPR). I woke up on the operating table during surgery; a very aggressive surgery to remove a lipoma mass. Nevertheless, the Neurosurgeon hacked my end plate off and damaged my dura. I was now diagnosed with Adhesive Arachnoiditis. From a very aggressive surgery; I was barely walking, using a cane, fitted for an ankle, foot and orthosis (AFO) brace and TENS unit under the Pain Management