My name is Jessica and I am from San Antonio, Texas. I have Parry Romberg's Syndrome and have never really shared my story with anyone other than the people who are really close to me. I can't say I know anyone else who has Romberg's personally at this time. However, I am ready to meet and hopefully help someone else by sharing my story and experiences with Romberg's Syndrome.
First I would like to tell all other Romberg's sufferers that together we can find strength, support, and friendship. I feel I can finally get some emotional and spiritual healing because I have discovered that I am not the only one on this earth who suffers from such a rare and relatively unknown disease.
I was diagnosed with scleroderma at the age of three after I bruised my cheek from falling in the backyard while I was playing football with my brothers. I am not sure the disease came as a result of this fall, but shortly after, my parents started noticing the bruise changing colors and my skin was becoming shinier and tougher. My parents then took me to see Dr. Fernando Guerra at San Rosa Hospital, where he performed a biopsy, taking a piece of tissue from my left shoulder blade. Incidentally, after the bruise didn't heal, he decided to perform this minor procedure from my back because that is where I also had a small patch of skin with the same discolored and tough exterior. When the doctor discovered the results, he informed my parents that I had developed a rare incurable disease named scleroderma. The worst part was that they were also told that I would not live beyond my teen years. My parents were devastated and decided to seek other sources in the hope that a cure would be found.
My father took my family and I to Mexico to ask the Virgin of Guadalupe to cure me from my illness and save my life. By the time I was about five years old, the disease had already disfigured my left side drastically.
My parents did not give up hope and continued to seek a doctor who might know about this disease for treatment. Dr. Donald Greer was the first doctor I remember seeing at the University Consultant's Clinic when I was about six years old. At that time he was not sure what he could do for me, other than to reconstruct my left side, but I was too young and my face was not fully developed. Therefore, he decided that in the meantime he could give me silicone injections to fill out my cheek. I remember they were very painful and very expensive. I did not have any insurance and was not considered disabled so my father had to pay three hundred dollars every time I visited the doctor for these injections.
My mother tried to seek help from other sources such as the United Way, but I was denied because my disease was relatively unknown and unless I had cancer, they were not going to help us with medical coverage. My mother was very discouraged because she felt she was running out resources, but she continued to trust and have faith in Dr.Donald Greer, an experienced plastic surgeon staffed at the then Bexar County Hospital.
A few years passed after the silicone injections and Dr. Greer was moving to another state to research and teach at a university. I didn't see any other physicians again until I was about twelve or thirteen years old. This was a very vulnerable time in my life because my mother was away so she was not there when I had my first operation. My sister Pat was the one who stepped in and cared for me every step of the way.
My first procedure done was a graft of fatty tissue taken from my abdomen. The operation took about twenty hours. I was in the hospital for about two weeks. The graft was not successful. The doctor started noticing, days after the operation, that the graft was turning black. Which meant the graft was going to have to be removed and surgery was not one of the options. I was sent home with lots of gauze, peroxide, saline solution, and plenty of band aids. I was to clean the infected area four or five times a day. Luckily, I had my sister and aunt, who was a nurse, to help in caring for me during this disappointing time.
I returned to school about a month later, still wearing a bandage on my face as I was still oozing but healing well. I was beside myself because I didn't expect for the operation to turn out the way it did. Nevertheless, I did not give up hope. A dental school offered to perform more reconstructive surgery with the help of a team of oral maxillofacial surgeons. I was given a jaw realignment, chin splint implant, and a skin graft. I was in recovery for months. In fact, I never really recovered from that painful operation.
I have several problems as a result of this operation. To start, I never regained full feeling on my left side. I suffered nerve damage, poor muscle control in my eye and mouth, limited jaw opening, jaw spasms, scarring in my mouth, and TMJ. At the risk of sounding like a crybaby, I can't take the disappointment and pain anymore, and I still feel that there is something more than can be done to at least correct some of those and other problems that plague me on a daily basis.
Overall, I would like to say that even though my operations have not all been successful, they have improved my appearance a lot. My cheek is not all sunk in and tough and my chin is fuller. Also, I have to say that the doctors who have worked on me have done a remarkable job, because no matter how skillful the surgeon is, Romberg's patients are very difficult patients to reconstruct because of the limited tissue, nerve, and bone factors. Therefore, I would like to apologize if I sounded as if they did not do their best to help my appearance cosmetically. To be honest, I blame this illness for all the problems I have developed from these operations, not the doctors.
In short, I would like to go on and write about every operation I have had since the jaw realignment, but I think I can list the major ones to make things easier for the readers. More importantly, I would like to stress that because of Romberg's, I must say I am a better person in heart and soul and I am glad I am me because my life has not been too bad at all. I am a very confident and intelligent individual with so many blessings that I cannot count them all in one day. I believe everything happens for a reason.
I have had over fifty operations and surgical procedures for Romberg's. I would be happy to share my experience and knowledge to help other Romberg's survivors.
Fatty tissue graft from abdomen to face (1984)
Jaw realignment (1986)
Skin Graft (1986)
Skin Graft from left shoulder blade (1987)
Muscle Graft from right arm (1988)
Bone Graft from head to cheek (1995)
Balloon implant placed for several months filled periodically to stretch the skin from my neck big enough to cover the scarring left from a bad skin graft scar along with more lifting of my eye and cheek bone (1992).
Reconstructive eye surgery - my eye was lifted and filled with cartilage from behind my ear. (1991)
Alloderm, synthetic tissue placed under eye and lift again (1992) with continual gradual filling of Alloderm for the next couple of years.
Note: There were a lot more scar revisions done as well in between these major ones but I can't remember all of them in detail.
Story edited 05-10-08 JTD
Story posted 08-22-08 SLE
Neck photo by Jessica Bruah
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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