- CASE FILE
I have a rare genetic condition that causes these subcutaneous cysts throughout my body. Everyday things from walking to writing cause pain.
ABOUT THIS CASE FILE
I was born with a very rare genetic disorder called Juvenile hyaline fibroidmatosis, which causes these hyaline cysts to form subcutaneously throughout my body. The symptoms first showed when I was around 4 y/o and since then it has only gotten worse. Between the ages of 4 to 18 I had surgery to remove different cysts every year at least once or twice a year. This helped a bit, but they would often grow back. I’ve never found anyone to help me find a more productive way of handling them and since I turned 18 having surgery regularly is not cost nor time fitting as I support myself. Living with this condition has made it tough to connect with people socially and romantically. I’ve often been one to be outcast often due to the way I look due to these cysts. The stress about my future and how long I will be able to work and if I will be able to find love often cause a regular cycle of depression as well. On top of the mental and emotional struggle in my social life, as more cysts grow and get bigger I am living in very agonizing pain most every day. Some of the worst ones are on my hand, feet, back, and ears. so something as simple as writing or running or buttoning my shirt and even laying down or sitting becomes not only more difficult but painful. All this leading to a cycle of depression as well. I have tried taking pill for nerve pain but even as well as Tylenol and aspirin but all of which barely touch the pain. I would really like some help finding a ways to treat or ideally cure my condition. Also alleviating the pain and soreness I feel day to day and creating some normalcy in life and hope for my future.