A while back, we asked for your teeth. No, not the ones still in your jaw, but the ones that came out for one reason or another.
We got quite a few, but now we need more!
SAB member, Carolyn Macica, PhD., and her study team have processed the teeth that were sent to her before by generous XLHers. They've already made some interesting findings about the mineral content in XLH teeth, which may be useful for understanding the mineral content of XLH bones.
Now she's looking to expand on those initial studies and would be grateful for any additional teeth that could be sent her way. They can be baby teeth if you have a child with XLH, or adult teeth if you're having them removed for some reason.
The address to mail them is:
Dr. Carolyn M. Macica
Frank H. Netter School of Medicine
Quinnipiac University
275 Mount Carmel Avenue, NH-MED 311H
Hamden CT 06518
Showing posts with label dentistry. Show all posts
Showing posts with label dentistry. Show all posts
Tuesday, April 5, 2016
Wednesday, December 2, 2015
XLH in medical journals
The Journal of Clinical Endocrinology and Metabolism recently ran an article co-written by Scientific Advisory Board member Thomas O. Carpenter, MD, entitled "Conventional Therapy in Adults with X-Linked Hypophosphatemia: Effects on Enthesopathy and Dental Disease." You can read the abstract here http://press.endocrine.org/doi/full/10.1210/JC.2015-2199 The remainder of the article is behind a paywall, but your doctor will likely be able to access it if you provide that link. Also, the link will take you to instructions for requesting a copy from the publisher.
The conclusion of the article: "Treatment [with phosphorus and a vitamin D metabolite) in adulthood may not promote or prevent enthesopathy [calcification of soft tissues]; however, it may be associated with a lower risk of experiencing severe dental disease." J. Clin. Endocrinol. Metab 100: 3625-3632, 2015.
Accompanying that article was a commentary piece by another SAB member, Michale J. Econs, MD, entitled "Conventional Therapy in Adults with XLH improves Dental Manifestations, But Not Enthesopathy." Again, you can read a portion of it (and find instructions for obtaining a full copy) here: http://press.endocrine.org/doi/abs/10.1210/jc.2015-3229
While the conclusion (that conventional treatment of adults is unlikely to reduce the risk of enthesopathy) is less than encouraging, the good news is that the article and the commentary both document the fact that adults with XLH do, indeed, have ongoing symptoms, i.e., dental abscesses and enthesopathy. Getting this fact on record, in peer-reviewed, highly regarded medical journals is a slow process, but one that is critical for educating physicians who seldom see an XLHer and are unaware of the adult symptoms.
The conclusion of the article: "Treatment [with phosphorus and a vitamin D metabolite) in adulthood may not promote or prevent enthesopathy [calcification of soft tissues]; however, it may be associated with a lower risk of experiencing severe dental disease." J. Clin. Endocrinol. Metab 100: 3625-3632, 2015.
Accompanying that article was a commentary piece by another SAB member, Michale J. Econs, MD, entitled "Conventional Therapy in Adults with XLH improves Dental Manifestations, But Not Enthesopathy." Again, you can read a portion of it (and find instructions for obtaining a full copy) here: http://press.endocrine.org/doi/abs/10.1210/jc.2015-3229
While the conclusion (that conventional treatment of adults is unlikely to reduce the risk of enthesopathy) is less than encouraging, the good news is that the article and the commentary both document the fact that adults with XLH do, indeed, have ongoing symptoms, i.e., dental abscesses and enthesopathy. Getting this fact on record, in peer-reviewed, highly regarded medical journals is a slow process, but one that is critical for educating physicians who seldom see an XLHer and are unaware of the adult symptoms.
Wednesday, April 30, 2014
Dental Manifestations of XLH
Many XLH patients know what it's like to have a spontaneous abscess, when a tooth with no cavities or trauma suddenly becomes infected for no apparent reason. We know it's a common symptom of hypophosphatemia, sometimes happening during childhood and in other cases, waiting until early adulthood.
Some dentists and endodontists, however, may be skeptical about the cause of the abscesses, despite published reports confirming it. [One of the earliest case reports was "Hereditary Hypophosphatemia ... Presenting Primary Dental Manifestations" in Oral Surgery, Oral Medicine and Oral Pathology, volume 22, No. 2 (1966).] If your dentist/endodontist would like to learn more about the connection between your hypophosphatemia and your dental health, there are a number of resources you can refer them to.
For a quick overview, available for free download here, there's "A Clinician's Guide to X-linked hypophosphatemia," (by Scientific Advisory Board member Thomas O. Carpenter, MD, et al.) which briefly mentions dental issues. There's also an oral presentation by our Scientific Advisory Board member, Raghbir Kaur, DMD, in the XLH Day video here (beginning at the 20:30 mark).
If your dentist/endodontist is a member of the International & American Associations for Dental Research, with access to Sage Publications, there's a new article entitled "Rare Bone Diseases and Their Dental, Oral, and Craniofacial Manifestations," in the Journal of Dental Research. The abstract is available here. The article covers a number of rare bone diseases, including XLH, and highlights for each one the causative mutations, etiopathology, and treatments.
Some dentists and endodontists, however, may be skeptical about the cause of the abscesses, despite published reports confirming it. [One of the earliest case reports was "Hereditary Hypophosphatemia ... Presenting Primary Dental Manifestations" in Oral Surgery, Oral Medicine and Oral Pathology, volume 22, No. 2 (1966).] If your dentist/endodontist would like to learn more about the connection between your hypophosphatemia and your dental health, there are a number of resources you can refer them to.
For a quick overview, available for free download here, there's "A Clinician's Guide to X-linked hypophosphatemia," (by Scientific Advisory Board member Thomas O. Carpenter, MD, et al.) which briefly mentions dental issues. There's also an oral presentation by our Scientific Advisory Board member, Raghbir Kaur, DMD, in the XLH Day video here (beginning at the 20:30 mark).
If your dentist/endodontist is a member of the International & American Associations for Dental Research, with access to Sage Publications, there's a new article entitled "Rare Bone Diseases and Their Dental, Oral, and Craniofacial Manifestations," in the Journal of Dental Research. The abstract is available here. The article covers a number of rare bone diseases, including XLH, and highlights for each one the causative mutations, etiopathology, and treatments.
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