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)
Scleroderma en Coup de Sabre and Parry Romberg Syndrome. Linear scleroderma en coup de sabre is a particular form of linear scleroderma that may not truly be related to other forms. Thomas J.A. Lehman, MD. 2009. Hospital for Special Surgery.
En coup de sabre morphea and Parry Romberg syndrome: a retrospective review of 54 patients. En coup de sabre morphea and Parry Romberg syndrome frequently coexist and are likely both variants of morphea. Bilateral disease is more common than previously reported. The efficacy of antimalarials and methotrexate in the treatment of these diseases remains unclear. PubMed, J Am Acad Dermatol. 2007 Feb;56(2):257-63. (Also see En Coup de Sabre and Morphea)
Plaque-type scleroderma associated with linear and oesophageal features and facial and extra-facial hemiatrophy. The combination of several sub-types of scleroderma and facial and extra-facial hemiatrophy in the same patient may indicate that these entities actually represent different spectra of the same disease. PubMed, Ann Dermatol Venereol. 2007 Jan;134(1):68-71. (Also see Morphea)
Neuroretinitis, Parry Romberg syndrome, and scleroderma. The authors report a new case of progressive hemifacial atrophy (Parry Romberg syndrome). They emphasize the rarity of this disease, its etiology (cause), which remains controversial, the diversity of its ophthalmologic manifestations, and its relations with scleroderma and autonomic nervous system disorders are discussed. Acute neuroretinitis remains rare and its pathogeny is unknown. PubMed, J Fr Ophtalmol. 2005 Oct;28(8):866-70.
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. 02/25/2011.
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. 2005 Sep;98(9):940-2.
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. 2005 Sep-Oct;22(5):436-9.
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.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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