1. Osteogenesis Imperfecta Network The page is to support others dealing with osteogenesis imperfecta I was born in November 82 with type III osteogenesis imperfecta (A.K.A O.I.). http://www.geocities.com/Heartland/Hills/5769

Hello, my name is Sabrina and I am the founder of this O.I. Network. I was born in November 82 with type III Osteogenesis Imperfecta (A.K.A O.I.). I have created this web page in the hopes to help others dealing with this. Thank you. You can contact me at: My private email Also in case anyone is interested, this picture of me was taken on February 2nd 2003. This Section: The Life of families with OI-Biographies A brief history of Sabrina's life Disabled's Rights, an article I wrote What Is Beauty? A poem I wrote The life of Ronda and her children! ... Links reguarding O.I. New! O.I. Network Message Board My new guest book, the other didnt work anymore: Sign Guestbook View Guestbook visitors since 5/17/2000 Last updated on March 29 2003

2. Osteogenesis Imperfecta Foundation: Welcome To The OI Foundation Homepage! Supports and encourages medical research and disseminates information to patients, their families, and medical professionals http://www.oif.org/

Click on our logo at any time to return to this homepage.) (Updated 3/27/03) Welcome to the Osteogenesis Imperfecta Web Site! Osteogenesis Imperfecta (OI) is a genetic disorder characterized by bones that break easily often from little or no apparent cause. A person with OI can break a rib while coughing, or a leg by rolling over in their sleep. Did you see us on TV? Dateline NBC and Discovery Health have both recently aired stories or documentaries about OI. View information about the issues addressed on these programs. New Rodding System A new rodding system has been designed specifically for the surgical treatment of bone deformities and fractures in patients with osteogenesis imperfecta. Visit the page for more information. New Drug Information: For up-to-date information from our Medical Advisory Council about Forteo, a new drug developed to treat osteoporosis, visit the Medical Treatments page. New Ways to Get Connected!! There are exciting new features on the website to help you stay connected to the OI community... new chat rooms, an instant messaging feature for those registered and logged onto the OI website, and a bulletin-board style discussion forum. The "

3. Osteogenesis Imperfecta Personal page about Jojo suffering from osteogenesis imperfecta. http://www.ptialaska.net/~sturm/

October 2002: Visitors: please note...this site is ANCIENT! I'll update links one of these days. Go here for information about Pamidronate, an effective therapy for kids with OI. Welcome to my OI Home Page! My name is Carone Sturm, I live in Fairbanks Alaska, and my son, Jojo, has osteogenesis imperfecta. The following sites are some that I have found while surfing for information about OI, or "brittle bone disease." This web page is not affiliated with any official organization; it's simply a collection of information you may find of interest. You'll find my son's story under " Jojo Sturm " below. Please let me know if you'd like to include information about yourself here...sharing information is what it's all about! Send me an e-mail at sturm@polarnet.com. Organizations OI Resources Listserver ... Child Abuse Issues Organizations The Osteogenesis Imperfecta Foundation The most active OI organization in the United States, the OIF's goal is to improve the quality of life for individuals affected by OI through research, education, awareness and mutual support. Lots of good information here! European Osteogenesis Imperfecta Organizations Hop the globe and visit the European Osteogenesis Imperfecta Foundation . Countries included here are Norway Germany France and Italy.

4. MEDLINEplus: Osteogenesis Imperfecta Fast Facts on osteogenesis imperfecta (osteogenesis imperfecta Foundation). osteogenesis imperfecta (American Academy of http://www.nlm.nih.gov/medlineplus/osteogenesisimperfecta.html

Skip navigation Other health topics: A B C D ... List of All Topics Osteogenesis Imperfecta Contents of this page: From the NIH General/Overviews Anatomy/Physiology Coping ... Children Search MEDLINE for recent research articles on Osteogenesis Imperfecta You may also be interested in these MEDLINEplus related pages: Bone Diseases Connective Tissue Disorders Bones, Joints and Muscles Genetics/Birth Defects From the National Institutes of Health Questions and Answers About Heritable Disorders of Connective Tissue (National Institute of Arthritis and Musculoskeletal and Skin Diseases) General/Overviews Fast Facts on Osteogenesis Imperfecta (Osteogenesis Imperfecta Foundation) Osteogenesis Imperfecta (American Academy of Orthopaedic Surgeons) Anatomy/Physiology Understanding the Structure of Bones (Osteogenesis Imperfecta Foundation) Clinical Trials ClinicalTrials.gov: Osteogenesis Imperfecta (National Institutes of Health) Coping Osteogenesis Imperfecta Issues: Psychosocial Needs of the Family (Osteogenesis Imperfecta Foundation) Diagnosis/Symptoms Bone Densitometry in Children and Adults with Osteogenesis Imperfecta (Osteogenesis Imperfecta Foundation) Disease Management Osteogenesis Imperfecta Issues: Fracture Management (Osteogenesis Imperfecta Foundation) Osteogenesis Imperfecta Issues: Pain Management (Osteogenesis Imperfecta Foundation) Nutrition Osteogenesis Imperfecta Issues: Nutrition (Osteogenesis Imperfecta Foundation) Specific Conditions/Aspects Broken Bones (Nemours Foundation) Hearing Loss and Bone Disorders (Osteoporosis and Related Bone Diseases-National Resource Center)

5. NIH ORBD-NRC - Osteogenesis Imperfecta osteogenesis imperfecta, Fast Facts on osteogenesis imperfecta. Bone Densitometryin Children and Adults with osteogenesis imperfecta. Clinical Trials. http://www.osteo.org/oi.html

Osteogenesis Imperfecta Fast Facts on Osteogenesis Imperfecta Bone Densitometry in Children and Adults with Osteogenesis Imperfecta Clinical Trials OI Issues: Child Abuse OI Issues: Dental Care for Persons with OI OI Issues: Education OI Issues: Fracture Management OI Issues: Genetics OI Issues: Hearing Loss OI Issues: Nutrition OI Issues: Osteoporosis OI Issues: Pain Management OI Issues: Pregnancy OI Issues: Psychosocial Needs of the Family OI Issues: Surgical Considerations OI Issues: Understanding Type I OI Rodding Surgery in Children with Osteogenesis Imperfecta Understanding the Structure of Bone in Osteogenesis Imperfecta For additional information on Osteogenesis Imperfecta contact: Osteogenesis Imperfecta Foundation 804 W. Diamond Avenue, Suite 210 Gaithersburg, MD 20878 Tel (301) 947-0083 or 800-981-BONE Fax (301) 947-0456 E-Mail: bonelink@oif.org Internet www.oif.org Revision Date: 11/2002 The National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases with contributions from the National Institute of Child Health and Human Development, National Institute of Dental and Craniofacial Research, National Institute of Environmental Health Sciences, NIH Office of Research on Women's Health, DHHS Office on Women's Health, and the National Institute on Aging. The Resource Center is operated by the National Osteoporosis Foundation, in collaboration with The Paget Foundation and the Osteogenesis Imperfecta Foundation.

6. Suomen Osteogenesis Imperfecta -yhdistys R.y. Suomen osteogenesis imperfecta yhdistys r.y. SUOMEN osteogenesis imperfecta -YHDISTYS R.Y. osteogenesis imperfecta -FÖRENINGEN I FINLAND http://www.suomenosteogenesisimperfecta.fi/

Hupsista... Selaimesi ei tue kehyksiä! Olisi ehkä syytä hankkia käyttöösi uudempi www-selain, esimerkiksi viimeisin Internet Explorer

7. Osteogenesis Imperfecta: Can Diet Help? Reviews the possible role of nutrition in this disorder. Questions whether it is solely a genetic condition. http://www.ctds.info/oi.html

Con nective Tissue Disorder Home Search Site Map ... Links Osteogenesis Imperfecta The Links to Nutrition Read my Content: Osteogenesis Imperfecta, Logic and Genetics Symptoms of Osteogenesis Imperfecta Compared to Symptoms of Nutritional Deficiencies Osteogenesis Imperfecta, Logic and Genetics Many researchers believe that osteogenesis imperfecta is an incurable genetic disorder caused solely by defective collagen genes. But is it? Many of the features of OI cannot logically be explained by defective collagen genes alone. If you consider nutrition as a factor in osteogenesis imperfecta, then there are logical explanations for many features of the disorder. If osteogenesis imperfecta were really caused solely by a defective collagen gene, then why would a collagen abnormality cause short stature, enlarged foreheads, hyaluronic acid abnormalities, flat nasal bridges, hypercalciuria (excess calcium in the urine) and heavy menstrual bleeding , all of which are common features of osteogenesis imperfecta? A defective collagen gene simply does not provide a logical explanation for many of the features we know about the disorder.

8. Osteogenesis Imperfecta a CHORUS notecard document about osteogenesis imperfecta osteogenesis imperfecta. "brittle bone disease" abnormalities of collagen/collagen production http://chorus.rad.mcw.edu/doc/00296.html

CHORUS Collaborative Hypertext of Radiology Musculoskeletal system Feedback Search osteogenesis imperfecta "brittle bone disease": abnormalities of collagen/collagen production Type I autosomal dominant age at presentation: 2-6 years Type II (congenital lethal OI) autosomal recessive pre or perinatal death (pulmonary hypoplasia) Type III (severe prograssive OI) autosomal dominant marked progressive limb and spine deformity Type IV autosomal dominant most mild form demineralization, cortical thinning multiple fractures with pseudoarthrosis exuberant callus formation blue sclerae presenile deafness dentinogenisis imperfecta wide sutures + Wormian bones Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 14 March 2001 Medical College of Wisconsin

9. Osteogenesis Imperfecta Foundation: Welcome To The OI Foundation Homepage! õ (Click on our logo at any time to return to this homepage.) (Updated02/13/03). Welcome to the osteogenesis imperfecta Web Site! http://www.oif.org/site/PageServer

Click on our logo at any time to return to this homepage.) (Updated 3/27/03) Welcome to the Osteogenesis Imperfecta Web Site! Osteogenesis Imperfecta (OI) is a genetic disorder characterized by bones that break easily often from little or no apparent cause. A person with OI can break a rib while coughing, or a leg by rolling over in their sleep. Did you see us on TV? Dateline NBC and Discovery Health have both recently aired stories or documentaries about OI. View information about the issues addressed on these programs. New Rodding System A new rodding system has been designed specifically for the surgical treatment of bone deformities and fractures in patients with osteogenesis imperfecta. Visit the page for more information. New Drug Information: For up-to-date information from our Medical Advisory Council about Forteo, a new drug developed to treat osteoporosis, visit the Medical Treatments page. New Ways to Get Connected!! There are exciting new features on the website to help you stay connected to the OI community... new chat rooms, an instant messaging feature for those registered and logged onto the OI website, and a bulletin-board style discussion forum. The "

10. Osteogenesis Imperfecta Foundation: Fast Facts Fast Facts on osteogenesis imperfecta. Definition osteogenesis imperfecta(OI) is a genetic disorder characterized by bones that http://www.oif.org/site/PageServer?pagename=FastFacts

11. Osteogenesis Imperfecta Federation Europe - OIFE Home Page Sorry you can not see the nice frames. This site is best viewed with the NETSCAPE3.0 or equivalent browser. **osteogenesis imperfecta Federation Europe**. http://www.oife.org/

**Osteogenesis Imperfecta Federation Europe** Welcome to the OIFE website What is OI The OIFE membership links to members ... OI RESEARCH This site has been visited times since 8 February 2001. It will be updated from time to time, So please come again. For comments and enquiries you can reach the OIFE by e-mail

12. Página En Español Sobre Osteogénesis ImperfectaPágina En Español Sobre Oste THE osteogenesis imperfecta CLINIC. _ AT KENNEDY KRIEGER INSTITUTE http://www.angelfire.com/de/osteogenesis

Esta página ha cambiado de dirección La nueva dirección es http://www.osteogenesis.info/ Si no eres redirigido automáticamente, pulsa sobre el enlace correspondiente a la nueva dirección Disculpen las molestias.

13. DFOI Bindev¦vssygdommen med medf¸lgende knoglesk¸rhed. Om foreningen, vejledere, litteratur, aktiviteter og links. http://hjem.get2net.dk/dfoi/

14. Information About Osteogenesis Imperfecta This site is in the process of being updated. Pleaseclick here for an equally out of date site. ). http://www.ptialaska.net/~sturm/Index.html

This site is in the process of being updated. Please click here for an equally out of date site. :-)

15. MEDLINEplus Medical Encyclopedia: Osteogenesis Imperfecta osteogenesis imperfecta. Definition Return to top osteogenesis imperfecta is a congenital(present from birth) condition of abnormal fragility of the bones. http://www.nlm.nih.gov/medlineplus/ency/article/001573.htm

Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Osteogenesis imperfecta Contents of this page: Illustrations Alternative names Definition Causes, incidence, and risk factors ... Prevention Illustrations Pectus excavatum Alternative names Return to top Brittle bone disease Definition Return to top Osteogenesis imperfecta is a congenital (present from birth) condition of abnormal fragility of the bones. Causes, incidence, and risk factors Return to top This bone disorder is usually present at birth as an inherited disease. Osteogenesis imperfecta (OI) is classified into four major types (and further subtypes). All four types of OI are caused by defects in the amount or structure of Type 1 collagen, an important part of the bone matrix. The collagen problem usually results from a dominant genetic defect. This defect may be acquired by several different mechanisms: The defect may be inherited in an autosomal dominant pattern from an affected parent. This means that an affected parent, who carries a single gene for the disorder, has a 50% chance of having children with the disorder. Any child who inherits this gene will be affected. The defect may be acquired by a spontaneous mutation occurring in the individual egg or sperm that formed the child. In this case, neither parent carries a gene for the disorder or is affected by it. The parents, in this case, are no more at risk than the general population for having another child with the disorder.

16. NFOI Norsk Forening for osteogenesis imperfecta TheNorwegian osteogenesis imperfecta Foundation. http://home.c2i.net/nfoi/

Norsk Forening for Osteogenesis Imperfecta The Norwegian Osteogenesis Imperfecta Foundation Meny Foreningen Diagnosen OI-Nytt Ungdomssiden ... Diskusjons-forum Summary in English Gjestebok Velkommen til NFOIs nettsider! Årsmøtesiden OI-Nyttsidene Ble stiftet i 1979 Gir ut bladet OI-Nytt Kan bidra med informasjon om diagnosen Er medlem av Funksjonshemmedes Fellesorganisasjon (FFO) Er medlem av de internasjonale organisasjonene OI-Norden og OIFE Adressen til NFOI er NFOI Postboks 4568 Nydalen 0404 OSLO Tlf.: 22799100 Fax.: 22799198 Denne siden er tilrettelagt for WWW av Andreas Henden

17. Osteogenesis Imperfecta Web Ring Would you like to Join My osteogenesis imperfecta Web Ring? Add yoursite? Edit your site? EMail Me Back, This osteogenesis imperfecta http://www.geocities.com/HotSprings/1699/oiwebring.html

Would you like to Join My Osteogenesis Imperfecta Web Ring? Add your site? Edit your site? E-Mail Me    This Osteogenesis Imperfecta Web Ring site owned by Kathy Olsen Skip Previous Previous Next ... List Sites The OI webring is sponsored by Adventure Angling This is a webring for anyone who has an OI related page. Please join and let us tell everyone out OI. Index! About Me! Links! Friends Page! ... About Troy and I

18. Literatura Médica Sobre Osteogenesis Imperfecta 1. Andersen, PE, Jr.; Hauge, M. osteogenesis imperfecta a genetic, radiological,and epidemiological study. Clin. Genet. 36 250255, 1989. http://www.aguaforte.com/oi/osteoref.html

1. Andersen, P. E., Jr.; Hauge, M. : Osteogenesis imperfecta: a genetic, radiological, and epidemiological study. Clin. Genet. 36: 250-255, 1989. PubMed ID : 2805382 2. Barsh, G. S.; David, K. E.; Byers, P. H. : Type I osteogenesis imperfecta: a nonfunctional allele for pro-alpha-1(I) chains of type I procollagen. Proc. Nat. Acad. Sci. 79: 3838-3842, 1982. PubMed ID : 6954526 3. Bauze, R. J.; Smith, R.; Francis, M. J. O. : A new look at osteogenesis imperfecta: a clinical, radiological and biochemical study of forty-two patients. J. Bone Joint Surg. 57B: 2-12, 1975. 4. Beighton, P. : Familial dentinogenesis imperfecta, blue sclerae, and wormian bones without fractures: another type of osteogenesis imperfecta? J. Med. Genet. 18: 124-128, 1981. PubMed ID : 7241530 5. Bembi, B.; Parma, A.; Bottega, M.; Ceschel, S.; Zanatta, M.; Martini,C.; Ciana, G. :Intravenous pamidronate treatment in osteogenesis imperfecta. J. Pediat. 131622-625, PubMed ID : 9386671 6. Bierring, K. : Contribution to the perception of osteogenesis imperfecta congenita and steopsathyrosis idiopathica as identical disorders. Acta Chir. Scand. 70: 481-492, 1933.

19. Osteogenesis Imperfecta Reviews the possible role of nutrition in this disorder. Questions whether it is solely a genetic Category Health Conditions and Diseases osteogenesis imperfecta......The page osteogenesis imperfecta The Links to Nutrition. that wasformerly at this URL has moved to www.ctds.info/oi.html. The http://www.mindspring.com/~sandysimmons/oi.html

The page: Osteogenesis Imperfecta: The Links to Nutrition that was formerly at this URL has moved to: www.ctds.info/oi.html The doctor of the future will give no medication, but will interest his patients in the care of the human frame, diet and in the cause and prevention of disease. Thomas A Edison Please click on the link to go to the new URL. If you have bookmarked this site, please remember to update your bookmarks with the new URL. If you have linked to this page in the past from your web site, please update your link to point to the new page. By linking to my new page, it will help the search engines find my site under its new URL, and your site will avoid having a broken link when this forwarding page is removed in the near future. Thanks!

20. The Osteogenesis Imperfecta Clinic At Kennedy Krieger Institute The osteogenesis imperfecta Clinic at Kennedy Krieger Institute comprises an interdisciplinaryteam of medical professionals providing treatment and research http://www.osteogenesisimperfecta.org/

THE OSTEOGENESIS IMPERFECTA CLINIC Osteogenesis Imperfecta An estimated 50,000 people in the United States live with osteogenesis imperfecta (OI), a genetically-based skeletal disorder characterized by abnormally brittle bones. Despite its prevalence and frequently severe effects, many people don't know this disorder exists. In fact, some parents who are not aware that their child has OI, have been accused of child abuse when they are unable to explain the cause of their child's fractures. What causes OI OI originates from a mutation in one of the two genes responsible for making Type 1 collagen, the protein of connective tissue, cartilage and bone. As a result of this mutation, affected individuals develop either collagen of poor quality or an insufficient amount of collagen. Both conditions cause brittleness of the bones. How severe is OI What is life like for individuals with OI Despite the obstacles they face, many individuals with OI enjoy productive and fulfilling lives well into their adult years. As OI awareness increases among the public and greater support is provided for research into the disorder, the future of individuals with OI will grow brighter. Currently, few clinics are equipped specifically to treat OI patients. Kennedy Krieger Institute, however, has established a clinic designed to treat OI symptoms and improve the quality of life for these patients. Update: OI News and Views Top l KKI's OI Clinic l

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