The first signs of Marie's Romberg's is documented in a picture of her at about age 2. It shows up as a slight drooping of the left lower eyelid, plus a shininess of the skin on the left cheek. Later pictures, taken at about two year intervals, show progressive shrinkage of the cheek area, and more drooping of the eyelid. Most pictures taken after about age ten were taken with the left side turned away from the camera for cosmetic reasons, but some deterioration still shows up.

Marie's parents never tried to make her feel ashamed about it, there just was nothing that could be done about it. One doctor thought it might be some kind of burn, possibly radiation, and treated it with ultraviolet light and lotion, but this did not work.

Marie finally started investigating what was wrong in an attempt to appease her mother-in-law. She would see Marie about once a year and kept saying it looked like it was getting worse. The picture search was to prove her wrong, but worked the other way. Marie and her husband, Rex, and Marie's parents took these pictures with them to the University of Iowa Hospitals and Clinics in Iowa City, Iowa, and met wit Dr. John Frodel, chief of the Otolaryngology Dept. This was in August of 1989. It was then that she was finally diagnosed, although Dr. Frodel said he did not remember the exact name at the time. He had read about this deformity, but had never seen a case. All he knew of it was one paragraph in the medical books describing the symptoms.

Over the next two years, Marie's records traveled the country with University of Iowa's doctors to various medical conferences in search of more information on the treatment of this deformity. At this time, her left cheek was almost void of soft tissue, the left temple was concave about 1/4", the left cheek bone was about 1/3 of it's normal mass, and her upper and lower jaws did not mesh and were pulled to the left about 3/4" and tilted about 15 degrees. (We found out later that, with careful examination of the early pictures, the jaw misalignment was present from the start.)

Her treatment started in May, 1990 with the application of orthodontic braces to bring her teeth into proper alignment. This was necessary in order to be able to level and center her jaw later. This took about a year. In May, 1991, Dr. Frodel performed the first free flap operation. He took vascularized muscle tissue from her abdomen and inserted it into her cheek, connecting the blood vessels to existing ones in her neck. This seemed to work well for a while, but, as muscle will do when not exercised, it shrank much more than anticipated. It ended up a hard lump no bigger than a pea.

In the fall of 1991, other surgeries were performed to graft skull bone to her cheek, move her jaws, build up her lower eyelid to a more normal profile, and other minor procedures to keep the effects of scar tissue down. A word of caution: the skull bone graft revealed an unknown effect of the disease. While normally built of two layers, the skull bone on her left side was fused into one layer. When the bone segment was removed, both layers came out, exposing the duramatter around the brain. This had to be patched with healthy bone from the right side of her skull.