My name is Zack and I’m a 37 year old male with Plasminogen Deficiency. I’ve had a wide range of symptoms, from lesions under my eyelids and on my cornea, to ulcers and GI complications, lesions on my gums, in my nasal passages, my kidney and ureter. My childhood was predominantly spent dealing with my eyes, as the surgeries to remove the lesions would just make the illness progress. In my adolescent years, I had a lesion calcify and break through the wall of my ureter. This started a similar process that occurred with my eyes, as the surgery to remove the calcification made it so I consistently formed lesions in my ureter that would calcify and drop down as kidney stones. I have passed over 50 kidney stones in my life, with the majority coming between the ages of 14 to 18. I’ve had over 100 procedures to address complications due to my illness.
Some of the kidney stones I’ve passed
I was the first patient to use the infused plasminogen under compassionate use because my symptoms were severe at the time. Since the infusions, everything in my ureter has cleared out; however when I have had to go without the infusions for several weeks, my symptoms recur quickly and the stones begin to reform. I have had to deal with chronic pain as a result of these lesions.
I am extremely grateful for the blessing that this drug has brought to my life. If even for a few moments, to feel that freedom of feeling “normal,” has changed my life forever. I look forward to the days when a treatment is more easily and readily available, so that myself and my community of people with this illness can finally truly recover.