Time for a Cure: Life with Psoriatic Disease

I was born with psoriasis in my scalp. When I was a toddler, a form of the Strep virus got hold of my tiny body and I became extremely ill. My fever was over 104 degrees, causing me to fall into a week long coma. This was the start of my lifelong journey with psoriasis and psoriatic arthritis/spondylitis. At 13, I contracted strep again even though my tonsils had been removed. This time it attacked my Kidneys, striking in the form of Nephritis.

I was hit with the next complication soon after, covered with Guttate psoriasis from head to toe. In those days, the recommended treatment was coal tar and saran wrap. I was blessed with long periods of remission, but when the psoriasis struck, it covered 90% of my body and lasted up to a year each time.

I developed lower back pain for no explainable reason. The pain once became so severe that I fainted. I recall vividly being revived by medical personnel from the ambulance that was frantically called. For some reason, the doctors never followed up about my back pain.

I was blessed with long periods of remission, but when the psoriasis struck, it covered 90% of my body and lasted up to a year each time.

As the years went by, I grew up, married at the age of 21 and started having my 4 beautiful children right away. I stayed active, but I always had pain. Doctors told me many different things, ranging from back strain, fibromyalgia, stress, stress, stress, lupus, RA, etc.. To complicate things further during this time, I was diagnosed with polycystic ovarian syndrome, and endometriosis. This hindered a diagnoses as I was constantly undergoing surgeries for ovarian cysts and giving birth to my children. After I had my fourth child, I had a partial hysterectomy with a bladder suspension.

I was desperate to find out what was wrong with me. I had a gut feeling by this time that it was all connected to my psoriasis.

My frustration with doctors grew with each complication, and my pain was not getting better. I underwent more ovarian surgery and one of my doctors suggested I see a gastroenterologist, so I did. It was the gastroenterologist who finally told me that I had fibromyalgia and that I needed to see a rheumatologist. I did research and found the BEST rheumatologist in the world.

My rheumatologist took my history, and then he took a pelvic x-ray. The x-ray told the story: psoriatic spondylitis. I FINALLY knew what it was. The sad part of this is that so much damage had been done because of the late diagnoses. It took 25 years! I also had a positive RF.

I was desperate to find out what was wrong with me. I had a gut feeling by this time that it was all connected to my psoriasis.

It is so important to obtain an early diagnoses. It is so important for us to push research and for us to find a CURE for this insidious disease. I am advocating for children and for young people who still do not have a cure. I have lived with psoriatic disease for 56 years and we STILL HAVE NO CURE. It is time for a change. I want to be part of that change.

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Mollie has lived with autoimmune diseases for 56 years, and she hopes to help young people find early diagnosis.