Patient Comments: Parry-Romberg Syndrome - Signs and Symptoms

Please describe the signs and symptoms of Parry-Romberg syndrome in someone you know.

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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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: sharing your sadness, 35-44 Female (Patient) Published: August 18

Parry-Romberg syndrome wasn't detected until I was 42 years old. I was 27 year old when everything started, but the doctor did not know. I got face reconstruction in 2006. In 2013, I was admitted in the hospital for brain inflammation and abnormal MRI results, I was in there for 11 days where they told me that I had the Parry-Romberg syndrome (lots of tests were performed on me including brain biopsy and spinal puncture). March 2014 I when back to the hospital again, where I stayed for 6 days, and they did plasma transfusion because the symptoms continued. Now my doctors are planning to do the protein transfusion. My symptoms are some short term memory loss, losing control of the right side of my body, unable to read and write as before, help with cocking, plus others things.

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Comment from: Kathy, 55-64 Female (Patient) Published: March 18

My symptoms started at 5 years old. I am 60 years old. I am still having problems with Parry-Romberg syndrome. On the left side of my face the tissue is getting softer. I have a bad indentation from hitting a door facing. On my right forehead, I have a dark indentation from scalp to my eyebrow. I have a large bald indentation on my scalp. I have a continuous indentation from the big bald area around the top of the scalp to right side forehead indentation. I suffer a lot of pain. I have migraines and serious problems with neuropathy. I have bad problems with digestives systems.

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Comment from: Saba, 25-34 Female (Patient) Published: January 27

I felt Parry-Romberg syndrome symptoms at the age of ten years. One side of my face is almost one inch longer than other side. I also have long panic depression attacks. It is really very painful.

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