Parry-Romberg Syndrome
There is a whole life behind a face.
They call it an extremely rare disease. To me it is simply the life I have had since childhood. I write here what nobody explained to me when I needed it: what it is, what it does, and what living with it is actually like.
My Face
The syndrome in four numbers
1 in 250,000
Estimated number of people living with it worldwide.
Ages 8 to 18
Typical onset. Eight in ten cases begin before the age of 20.
2 to 20 years
How long the active phase can last before it stabilises.
0
People with the same diagnosis I have met in person.
The figures come from the medical literature cited on the syndrome page. The last one is mine.
From the diary
Chapters I write as they come, unhurried and unfiltered.
The first chapters will appear here soon.
Two minutes of your time travel further than you think
I am not asking for money or hours. One share, one mention, one story. I left ready-made texts and images here so you do not have to think about what to write.
Open the share kitIf you live with this too, tell me
Among everyone I know, in person and online, I have never met anyone with the same diagnosis. If that person is you, or you know them, this is the door.
Leave a messageGet new chapters
No spam. Only when I write something worth your time.