Amy developed symptoms of PIC just before her wedding. She has has a challenging time since her diagnosis, struggling with the side effects of medication and the emotional impact that comes with the disease...
Rare Diseases like PIC don’t stop at their diagnosis- if you’re lucky enough to even get one. It starts an endless cycle of bills, insurance, mental and physical anguish. That’s just for the patient. Rare disease requires the whole family’s participation. Appointments usually require travel and time away from work and family. Yet, attention isn’t brought to the fact that most treatments-while miraculous- are just as damaging as the diseases.
Dozens of people are congratulating me and my new husband; and off in the corner of my vision is the constant flicker of lights. Days before my October 2014 wedding I began seeing sharp bright light in the corner of my eye. I’ve had issues in the past with other rare diseases like MEWDS and AZOOR so I thought it was stress. Only after the honeymoon did I notice blind spots. Only then did my world begin to tailspin out of my control. One well-meaning misdiagnosis led me to a referral to Will’s Eye Hospital. Which is where my PIC diagnosis would come and my treatment would begin.
Details are superfluous- mass doses of prednisone led to weight gain, mood swings, and even a broken bone. In the end it was my desire to start a family that led to the localized steroid treatment. Where prednisone did not raise the pressure in my eye- steroid pellets do. I’ve undergone one cataract removal and so far 5 -or 6- trabeculectomy’s for glaucoma. I’ve gone from massive highs and lows with my IOP and with that my mental health has taken a beating. I’ve actually lost more sight from the consequences of treatment than I have from my original diagnosis of PIC. Read that sentence again. More damage caused by treatment than the actual disease.
I wait for the next curve ball, but more importantly I wait for better to come. I want better treatment and I need better options. Rare diseases mean so many of us persevere with nothing better than a band aid to cover our battle wounds. However, I am acutely aware there are those suffering in far worse conditions and diseases. So, while at the end of the day we all need better there’s still much to be grateful for.