Living with Parry-Romberg syndorme

By Isabella, Parry-Romberg syndrome, New Zealand, November 24, 2018


Parry–Romberg syndrome is a rare disease characterized by progressive shrinkage and degeneration of the tissues beneath the skin, usually on only one side of the face but occasionally extending to other parts of the body. I was diagnosed with this disease when I was 5 years old on the left side of my face, I am now 17 and although I have a reasonably mild case on the outside. Over the past few years it has caused a tremendous amount of pain and strain on my jaw which resulted in me not being able to open my mouth very far and only being able to eat liquids. I ended up having a jaw surgery which has improved the pain and range of my jaw opening. I find it quite hard having this disease in New Zealand as we are a small country so there are no doctors that have ever treated someone with it before which can cause a bit of isolation but I stay positive. I would love to spread the word in NZ and create a rare disease community in our small country!!


Find others with Parry-Romberg syndrome on RareConnect, the online platform for people affected by rare diseases.


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