Gorham-Stout Syndrome Link Database

LGD Alliance - Europe soon to be registered

The activities of Lymphangiomatosis and Gorhams Disease Alliance - Europe have legal status now. We are moving on to establish and register Lymphangiomatosis and Gorhams Disease Alliance - Europe, LGD Alliance - Europe, a not for profit sister association of LGD Alliance spreading the activities and reaching towards the patients and families all around the Europe. The country for registration will be Finland, but field of activity and members will be scattered around the Europe.

About this site:
Our daughter (baby) was diagnosed with Gorham-Stout Disease at the age of 11 month because a heavy chylothorax hindered her breathing. While searching for information a lot of links filled my bookmark folder. So I started to sort them and want to share the result with the world.
You can see this also as small register for cases with gorham's syndrome. This may be useful because there is no database collecting the rare number of cases and no studies examining this rare disease.


Case Reports:

Title Link Year Patient Area of disease Treatment Source Authors Clinic Free Article Pay Article Note
Chylothorax in Gorham's syndrome. A common complication of a rare disease Abstract

Full Article (PDF)
1994 Case 1: male, 30 years

Case 2: male, 18 years
Case 1: Thorax, ribs

Case 2: Thorax, ribs, left scapula, clavicle, proximal humerus, and first rib
  Chest, Vol 105, 208-213 ML Tie, GA Poland and EC Rosenow 3rd Division of Internal Medicine, Mayo Clinic, Rochester, MN 55905 X   Contains a list of 24 case reports of patients with Gorham's Syndrome and associated Chylothorax from 1954 to 1993.
A Case of Gorham’s Disease with Chylothorax Treated Curatively with Radiation Therapy Full Article (HTML)

Full Article (PDF)
2005 female, 31 years right scapula, multiple thoracic and lumbar vertebral bodies, and multiple ribs on the right side   Clinical Medicine &: Research Volume 3, Number 2: 83-86 Bethany M. Duffy, BA; Rafael Manon, MD; Rakesh R. Patel, MD; and James S. Welsh, MD University of Wisconsin Cancer Center X    
Seltene Differenzialdiagnose eines Chylothorax Abstract 2007 male, 17 years thorax wall   Pneumologie 2008; 62: 196-199 J. Bernstein, M. Engelhardt, S. Retzlaff Klinik für Pneumologie, HELIOS Kliniken Schwerin   X German text
Platelet-derived growth factor receptor-beta in Gorham's disease Full Article (HTML)

Full Article (PDF)
2006 male, 17 years spine, ribs Spine stabilization, thalidomide, celecoxib, interferon-alpha2b, pamidronate, zoledronate, thoracotomy, pleurectomy, talc pleurodesis, and imatinib mesylate Nature Clinical Practice Oncology (2006) 3, 693-697 Jeroen Hagendoorn, Timothy P Padera, Torunn I Yock, G Petur Nielsen, Emmanuelle di Tomaso, Dan G Duda, Thomas F Delaney, Henning A Gaissert, Jennifer Pearce, Andrew E Rosenberg, Rakesh K Jain and David H Ebb Harvard Medical School, Boston, MA, USA X    
Interleukin-6: a potential mediator of the massive osteolysis in patients with Gorham-Stout disease Full Article (PDF) 1996 male, 9 years resorption of mandible, extended to maxilla, zygoma, right parietal region, and cranium calcitonin and bisphosphonates (pamidronate), radiation Journal of Clinical Endocrinology and Metabolism Vol. 81, No. 5, 1996 Rowena D. Devlin, Henry G. Bone III, and G. David Roodman University of Texas, USA X    
Chylothorax associated with massive osteolysis (Gorham's syndrome) Full Article (HTML)

Full Article (PDF)
2001 male, 15 years parietal and visceral pleura, ribs Thoracic duct ligation Ann Thorac Surg 2002;73:1956–7 Koichi Fujiu, MD, Ryuzo Kanno, MD, Hiroyuki Suzuki, MD, Naoya Nakamura, MD, and Mitsukazu Gotoh, MD First Departments of Surgery and Pathology, Fukushima Medical University, Fukushima, Japan X   patient died of lymphocytopenia
Case 92: Gorham Syndrome Full Article (HTML)

Full Article (PDF)
2004 female, 31 years anterior mediastinum, pleural surfaces, adjacent to upper posterior ribs and the thoracic spine, extending from the hila into the lung parenchyma bilateral chest tubes, two rounds of pleurodesis with talc, pericardial drainage, total parenteral nutrition, and 33-Gy external beam radiation therapy in the mediastinum Radiology: Volume 238: Number 3—March 2006 Jannette Collins, MD Department of Radiology, University of Wisconsin X    
The Phantom Full Article (PDF)
1998 male, 19 years ribs radiotherapy, surgical dissection of the thoracic duct and partial pleurectomy, bisphosphonates Respiration 1998;65:417–420 L. Plasswilma, I. Hennig, M. Spoendlin, W. Wegmann Department of Radiology, University Hospital, Basel, University Department of Internal Medicine, Kantonsspital Bruderholz, and Institute of Pathology, Liestal, Switzerland X   radiographic and clinical examinations have indicated arrest of the bone resorption
Gorhams Disease Complicated by Chyloma of the Chest Wall Abstract

Full Article (PDF)
2006 male, 22 years anterior mediastinum, cystic lesion along the posterior chest wall, vertebral bodies thoracic surgery, pleurodesis by OK432 streptococcal preparation The Japanese Journal of Thoracic and Cardiovascular Surgery 2006; 54: 311–313 Akihiko Kitami, MD, Takashi Suzuki, MD, Shuichi Suzuki, MD, Ryosuke Usuda, MD, Yoshito Kamio, MD and Mitsutaka Kadokura, MD Respiratory Disease Center, Showa University, Japan X   A two-year follow up did not show any reoccurrence of the chylothorax.
Chylothorax in Gorham's Disease Full Article (PDF)
2002 female, 25 years old ribs, vertebral bodies radiotherapy, pleurodesis with OK-432 J Korean Med Sci 2002; 17: 826-9 Won Sup Lee, Sung Han Kim, Inho Kim, Hark Kyun Kim, Keun Seok Lee, Sang Yoon Lee, Dae Seog Heo, Bong-Soon Jang, Yung-Jue Bang, Noe Kyeong Kim Department of Internal Medicine, and Orthopedic Surgery., Cancer Research Institute, Seoul National University, Korea X   Even though there was no definite response to radiotherapy and pleurodesis, the patient showed stable condition up to 20 months after diagnosis.
The Gorham-Stout syndrome (Gorham’s massive osteolysis) - A REPORT OF SIX CASES WITH HISTOPATHOLOGICAL FINDINGS Abstract

Full Article (PDF)
1998 Case 1: female, 77 years

Case 2: female, 70 years

Case 3: female, 19 years

Case 4: female, 78 years

Case 5: female, 83 years

Case 6: female, 56 years
various suggest bisphosphonates or calcitonin THE JOURNAL OF BONE AND JOINT SURGERY 1999;81-B:501-6. G. Möller, M. Priemel, M. Amling, M. Werner, A. S. Kuhlmey, G. Delling Hamburg University School of Medicine, Hamburg, Germany X   Study provides good evidence of hyperactive osteoclastic bone resorption causing osteolytic changes. It seems reasonable to suggest that antiresorptive therapy, for example with bisphosphonates or calcitonin, started in an early phase of the disease, could lead to a dramatic improvement in the treatment of progressive osteolytic changes.

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