“What’s With Your Face”: How I Live With Parry-Romberg Syndrome 

By | August 9, 2021

PARRY-ROMBERG SYNDROME IS A RARE PATHOLOGY , the genesis of which has not yet been fully studied by doctors. In a person with this disease, the muscle and bone tissues of one half of the face atrophy (there are much fewer cases when the disease affects the entire face). The disease develops slowly: first, as a rule, the skin and subcutaneous tissue atrophy, then muscles and bones. In this case, the motor function of the muscles is usually not disturbed. Atrophy most commonly occurs in the lips, eyes, nose, and ears. Less often, it affects the forehead, palate, tongue, and even less often the neck and other parts of the body.

The disease can be congenital, or it can develop against the background of intoxication, infections or physical injury. As a result of these processes, the face is deformed and takes on an asymmetric shape: the side affected by the disease turns out to be less healthy. Sometimes the development of the disease is accompanied by a decrease in skin sensitivity, depigmentation, loss of eyebrows and eyelashes. We spoke with the heroine who faced this condition.

Very often I hear the question: “What about your face?” How to answer this, I do not know. I had no head injuries, my parents didn’t beat me, and I wasn’t born like that. The deformation of my face happened in about two years – that is, not instantly, as some people think. Why Parry-Romberg syndrome chose me, not a single doctor has yet said for sure. The culprit is childhood trauma. At the age of six, my older sister and I played some kind of outdoor game, and I broke my arm. I was admitted to the hospital. After a while, eyebrows and eyelashes fell out, and a barely noticeable red spot appeared on the cheek, which the parents took for lichen. At that time, no one – neither I nor my family – imagined that a serious, incurable disease could manifest itself in this way.

Soon after the fracture of the arm, constant aching pains appeared. The bones of the arms and legs were especially painful – it seemed that someone was twisting them. I also had a headache, I could not eat, I fainted, I vomited. Something similar, it seems to me, happens during an epileptic seizure. At the same time, the face, as is often the case with people with such a disease, did not hurt. Unless she sometimes felt a barely noticeable muscle tremor.

Childhood do not remember, because a lot of time prov Mom took me to different specialists and they all shrugged their shoulders and could not diagnose. Since too much time has passed since that moment, I don’t remember much. I think that period of my life was more terrible for my parents, because it was the 90s, and my family lived very poorly, there were no good doctors in Irkutsk.

My mother and I visited an endocrinologist, oncologist, rheumatologist, dermatologist, but all of them could not make a diagnosis. Mom was in despair, so she decided to try unconventional methods of treatment. We went to fortune-tellers who saw the cause of the disease in fright, healers – they tried to remove the spoilage from me with the help of red wine and the priest – he forgave original sins and saw the problem that the parents were unbaptized.

After all this, we finally met a competent specialist, he turned out to be a neurologist from the Irkutsk Regional Children’s Clinical Hospital. She sent me for a biopsy and a consultation at the Research Institute of Rheumatology of the Russian Academy of Medical Sciences. There I was diagnosed with Parry-Romberg syndrome and prescribed medications that I had been taking for many years. When they ran out, they had to be ordered in Moscow – in Irkutsk, the necessary medicines were simply not available.

ate in hospitals. Then I was constantly pulled out of a comfortable, suitable environment for me – I was sent to the hospital of the next departments of hospitals. It seemed to me that in each new department I lay the longest. Probably, it was so, because the doctors could not understand what was happening to me, and were in no hurry to allow me to leave the hospital ward.

A year later, I felt much better, I no longer screamed from the constant aching pain in my bones, I could eat, which means that the drugs really helped. I began to go to hospitals for inpatient treatment much less often – about once a year. The most unpleasant thing there for me was the daily inspection. The head doctor took an outpatient card and read out notes about the course of the disease, and the students of the residency listened to it. Since my illness is rare, I have always felt the special attention of doctors and medical students. I think that then my child’s psyche was slightly traumatized. Every time the doctors performed an examination, I silently looked at them and did not react in any way, I felt like a guinea pig. But over time, hospitals have become a familiar environment.

I was lucky with the doctors I met in Moscow. They did everything possible from what, in principle, Russian doctors were able to do at that time – they made a diagnosis, prescribed effective drugs, and confirmed their disability, which helped a lot in purchasing expensive drugs. When the disease progressed, there were good people next to my family who did not refuse help – relatives, colleagues of my mother, family friends. They gave money for a trip to Moscow. I am infinitely grateful to my mother, and I can’t even imagine what efforts she had not to give up on me at that moment.

Remission came at the age of ten, when I went to fifth grade. I returned to the same school where I studied before. There were no more seizures, however, sometimes there was aching pain in the bones, which I still feel. I was getting the same therapy. Over time, I began to feel sick from the pills, I just threw them away, afraid to tell the doctor that I was feeling bad. Then I did not know that all the most difficult tests were still ahead, because by that time the deformation of the face was already strongly noticeable.

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