Parry-Romberg Syndrome - Signs and Symptoms

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What are the signs and symptoms of Parry-Romberg syndrome?

Initial facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip (nasolabial fold) and subsequently progress to the angle of the mouth, areas around the eye, the brow, the ear, and the neck. The deterioration may also affect the tongue, the soft and fleshy part of the roof of the mouth, and the gums. The eye and cheek of the affected side may become sunken and facial hair may turn white and fall out (alopecia). In addition, the skin overlying affected areas may become darkly pigmented (hyperpigmentation) with, in some cases, areas of hyperpigmentation and patches of unpigmented skin (vitiligo). Parry-Romberg syndrome is also accompanied by neurological abnormalities including seizures and episodes of severe facial pain (trigeminal neuralgia).

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Comment from: Buenajen, 25-34 Female (Patient) Published: January 05

When I was around eight Parry-Romberg syndrome started with my lip thinning only on my right side. Then I would get the facial nerve pain about every three years and my face would thin. My whole right side of my face and neck thinned out due to fat loss. My eye sunk back due to the fat loss. My right side of my jaw would lock. The eye doctor told me the pressure in my eye has dropped. I also have lost peripheral vision. I have double vision if I try to see peripherally, also have severe dry eye. My face has dark pigmentation. I have had dizzy spells and migraines. My rheumatologist diagnosed me with scleroderma morphea as well, on my back I have scleroderma. After having an endoscopy done they also found low pressure in my esophagus. All my CT scan and x rays of the brain came back normal. My rheumatologist and neurologist both diagnosed me through clinical findings.

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Comment from: johanna, 65-74 Female (Patient) Published: February 17

My Parry-Romberg syndrome started when I was 13 years old and progressed to half of my left face. My eye is sunken in and I had plastic surgery done three times. Liposuction of the fat from my stomach is injected in my face but it does not last. The last surgery was done 15 years ago. The disease has not stopped, I still slow more dents in my forehead.

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