Jessica Garcia – San Antonio, TX

Feb 20, 2023

I am a Parry Romberg patient. I was diagnosed at 2 or 3 years of age. PRS has been an aggressively devastating disease that atrophied or disfigured the left side of my face. Imagine growing up in a time when PRS wasn’t as recognized as present day time. And growing up in a poor predominantly latino neighborhood, was challenging enough on it’s own. I knew I was different but did not know why. I realized at a very young age that what I had was incurable. Despite my facial deformity, I was gifted with intelligence and a very outgoing personality. I used these gifts to develop my mental strength which amazed my teachers from the time I started kindergarten. More over, I became a more intuitive and guarded female. Realistically, vanity and physical beauty is a trait that humanity has as a common ground as a whole in society. Throughout my life from the age of 3 to present day, I am proud of who I am because I was given many special gifts and blessings which allowed me to cope and understand the dynamics of growing up with PRS. I was an above average child of intelligence that not only achieved academically, I also had wisdom that proved to be most precious and invaluable to me. Wisdom has guided me through the many challenges and trivial times. To conclude, I have shared my wisdom with others in a positive way overall. I remain dilligent and hopeful that one day, no one will ever have to be affected by PRS.

Parry Romberg Syndrome has no known origin, not hereditary, or has no genetic basis. PRS is an autoimmune disease that has also been mistaken for Scleroderma, another autoimmune disease that is linear or systemic. The latter being the more aggressive life threatening form of Scleroderma. In relative terms, they both affect the skin, bones, and muscles by preventing them to develop normally. PRS predominantly attacks females over males on the left side of the face. There is no cure for either autoimmune diseases; however, I have discovered that Dr. John Siebert, the leading world expert in treating patients with Parry Romberg Syndrome. Dr. Siebert has operated on over 300 PRS patients using a procedure he has developed, which has made him the leading expert in PRS patient surgical reconstruction.

In short, from the age of 14 years, I have undergone about 20 major reconstructive procedures and surgeries. Altogether, including the scar revisions, minor follow up procedures, and several major and minor oral maxillofacial reconstructive operations is around 50 to 60. However, Dr John Siebert is in Madison, WI. I live in San Antonio, TX. I would really like to see more financial support for patients who have similar circumstances. More importantly, there is strength in numbers. Education and awareness is essential. But first, we must have financial support in order to find a cure. I hope that goal is reached. Thank you for your time and consideration in reading my short story.. My objective was to educate and inform others of PRS. I know many people often wonder what really happened to my face. Now here is a more detailed explanation.