FD/MAS Publications
Association of Hearing Loss and Otologic Outcomes With Fibrous Dysplasia. JAMA Otolaryngol Head Neck Surg. 2018
Comorbidity, Craniofacial care
This study examines FD lesions surrounding the ear and skull base. Though many patients fear the loss of hearing, research suggests watchful waiting rather than aggressive surgery.
Click to ReadBest practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium. Orphanet Journal of Rare Diseases 2019
General
Treatment guidelines compiled by the International Consortium of FD/MAS researchers. These guidelines include a series of flowcharts that can help patients and caregivers decide on appropriate screening and treatment plans.
DOWNLOAD PDFBone-Grafting in Polyostotic Fibrous Dysplasia. J Bone Joint Surg Am. 2016
Axial and Appendicular Management
Research suggests that bone grafting is not an effective way to remove FD lesions since lesions tend to regrow and take over otherwise healthy bone grafts.
DOWNLOAD PDFResearch
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Fibrous dysplasia patients with and without craniofacial involvement report reduced quality of life inclusive of stigma, depression, and anxiety
GeneralThis study uses data from the online self-report Fibrous Dysplasia Foundation Patient Registry and demonstrates a social psychological impact of fibrous dysplasia on adults, in those with and without craniofacial involvement and with mild and severe forms of the disease. Clinical treatment should encompass assessment of quality of life issues and ensure access to psychosocial […]
DOWNLOAD PDFUtility of Optical Coherence Tomography in theDiagnosis and Management of Optic Neuropathy inPatients with Fibrous Dysplasia
Craniofacial careOptic neuropathy or vision loss is a major concern for people with craniofacial fibrous dysplasia (FD). Because surgical correction can lead to further complications, management and treatment for FD related vision loss has been a challenge and source of debate for decades. Some researchers suggest that vision loss in FD is more complicated than compression […]
DOWNLOAD PDFDental Perspectives on Fibrous Dysplasia and McCune-Albright Syndrome
Craniofacial careMcCune-Albright syndrome (MAS) is a rare multisystem disorder characterized by the triad of polyostotic fibrous dysplasia (FD), endocrine disorders, and café-au-lait skin pigmentation. Ninety percent of MAS patients have FD lesions in the craniofacial area, resulting in significant orofacial deformity, dental disorders, bone pain, and compromised oral health. Maxillomandibular FD is also associated with dental […]
DOWNLOAD PDFFD/MAS Beyond 40 – Video
A discussion with FD/MAS Alliance Medical Advisor, Dr. Edward Hsiao, UCSF, with FD/MAS advocate Shelley Hebert.
Click to watchSurgical Management of FD – Video
A discussion with FD/MAS Medical Advisor, Dr. Jason Malone of Nemours Children’s Hospital of Orlando, and FD/MAS Caregiver, Darci Christner.
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