The story of Jessica
I’ve had Parry Romberg Syndrome since 2 or 3 years of age. PRS is a rare auto immune disorder that affects one side of the face by deteriorating the skin, bone, muscle, and bone tissues. This incurable disease is not genetic, nor hereditary, and has no known origin. Once described as affecting one in every million people, today there are under 5,000 individuals with PRS. The common factor in progression varies for everyone. Parry Romberg Syndrome (PRS) becomes dormant after its progression, but there is currently no treatment available to stop its effects. This condition significantly impacted the left side of my face, leading to notable disfigurement. I have faced this challenge head-on, undergoing over 80 reconstructive surgeries from ages 14 to 42, even as PRS continued to challenge the grafted tissues.
Throughout this journey, I chose to excel academically and actively engage in extracurricular activities, proudly serving as head cheerleader and President of the National Junior Honor Society. The unwavering support from my teachers, classmates, and school staff strengthened my resolve.
As an adult, I encountered complications from further surgeries and have not undergone any since I was 42. I consulted with Dr. John Siebert, a leading expert in PRS treatment, who is ready to perform surgery on me; however, I face financial barriers in getting to Madison, Wisconsin.
My greatest wish is for a cure for Parry Romberg Syndrome. I am determined to undergo this surgery, as it would enable me to fulfill my purpose and contribute to a cause greater than myself. I remain steadfast in my commitment to pray for the well-being of all humanity.
I recommend that PRS patients research Dr. John Siebert, who is widely regarded as the leading expert in treating PRS. While his surgical approach to removing PRS from the body is not a cure, he has successfully reconstructed the majority of PRS patients.