Patient & Caregiver Stories
Parry Rombergs Syndrome, is also known as Progressive Hemifacial Atrophy or HFA. It may be the same as Linear Scleroderma affecting the face. (Also see Linear Scleroderma)
Case Report: Parry-Romberg syndrome associated with en coup de sabre in a patient from South Sudan - a rare entity from East Africa. Parry-Romberg syndrome is a very rare entity causing progressive hemifacial atrophy that could also be associated with linear scleroderma. PubMed, J Med Case Rep.
Retinal vasculitis the first clue in the diagnosis of progressive hemifacial atrophy. Parry-Romberg syndrome, also known as progressive hemifacial atrophy (PHA), is a rare disorder of unknown etiology characterized by unilateral facial atrophy and is associated with multiple ophthalmologic and neurologic manifestations. PubMed, Eur J Rheumatol, 2019 May 20;6(4):219-222.
Unilateral Neuroimaging Findings in Pediatric Craniofacial Scleroderma: Parry-Romberg Syndrome (PRS) and En Coup de Sabre (ECDS). Neuroimaging findings in pediatric PRS and ECDS are often supratentorial, stable, unilateral, and ipsilateral to skin findings, and they can precede cutaneous findings. PubMed, J Child Neurol, 2020 Oct;35(11):753-762. (Also see En Coup de Sabre)
Case Report: A queer case of Parry-Romberg syndrome with coexisting psychiatric ailment. We present such a case that manifested clinically with partial epilepsy and novel psychiatric complaints of agoraphobia. PubMed, Indian J Psychiatry.
A 26–Year Experience with Microsurgical Reconstruction of Hemifacial Atrophy and Linear Scleroderma. Patients treated early in their disease course have immediate and sustained correction of their deformity, with slowing or in most cases cessation of the disease process. PubMed, Plast Reconstr Surg, 2018 Nov;142(5):1275-1283. (Also see Linear Scleroderma)
Case Report: Parry-Romberg syndrome (PRS) in a patient with scleroderma. A clinical diagnosis of PRS was made due to be followed up by dermatology, rheumatology and maxillofacial surgery with the aim of reconstructive surgery once symptoms stabilise. BMJ Case Reports.
Surgery Saves Girl's Face from Rare Disorder. Parry-Romberg syndrome, also known as progressive facial hemiatrophy, was first identified in the early 1800s. It usually starts in childhood and gets worse with time, and it seems to be more common in girls. Amanda Gardner. CNN Health.
Beneficial effect of immunosuppressive drugs on Parry Romberg syndrome. We observed beneficial effects of immunosuppressive agents on neurologic lesions in particular in a patient with PRS who presented with immunoinflammatory findings and neurologic involvement, apart from cutaneous manifestations. PubMed, South Med J.
Progressive hemifacial atrophy with linear scleroderma. We think that linear scleroderma of childhood and hemifacial atrophy have considerable clinical overlap and these two syndromes appear to be manifestations of the same or related pathogenic processes. Recently, the beneficial effects of 1.25-dihydroxyvitamin D3 (calcitriol) were reported in adults and in children with linear scleroderma. Our result indicates that calcitriol may be an effective agent for treating localized scleroderma in children. PubMed, Pediatr Dermatol.
The Rombergs Connection is an international support group for people whose lives are affected by Rombergs Syndrome, sometimes known as Localized Scleroderma. Rombergs Connection.
Alicia B: Localized Morphea with possible Parry Romberg Syndrome The doctor kept saying something had eaten away at all the fatty tissue and the muscles which left it just skin, blood, bone, and nerve so when you look at it, it looks like I have dirt on my face and a gaping hole to go with it…
Edith: MCTD with En Coup de Sabre/Parry Romberg's, Lichen Sclerosus, Rheumatoid Arthritis, Sjogren's My GP is fabulous, but at the end of the day it is not enough. I would be lost without people like you…
Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye…
Iona: Parry Romberg Syndrome (Romania) That morning when I woke up I a rash under my right eye. It was about 1 centimeter, but I thought it was because I cried the night before so I did not see it as a problem that time…
Jessica G: Parry Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's…
Mary B: Scleroderma En Coup de Sabre I feel like it is tearing my head open. Sometimes I get headaches, and I believe it is because of this illness…
Vivi: Facial Scleroderma (Linear/Morphea or Parry Romberg's) I feel really bad, I want to get better, I want to be pretty, I am hurt when I see my cousins healthy and pretty and I can't stop covering my face because I am ashamed…
(Español/Spanish) Vivi: Esclerodermia Facial (Lineal/Morfea, Parry Rombergs) Me siento mal, quiero curarme, quiero ser bonita, me duele ver a mis primas bien y bonitas y yo no puedo descubrirme la cara porque me da pena…
Scleroderma Photos. Pictures of scleroderma symptoms.
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