My five year old daughter has Osteogenesis Imperfecta, and I have
now volunteered my time to the Osteogenesis Imperfecta Foundation,
the only national organization (non-profit) serving the needs of
persons with OI in the United States.

From my recent training at the bienniel OI conference in San Antonio
last week, I learned that there are an estimated 40,000-50,000 persons
affected with OI in the US, but the Foundation only knows of 2000 persons;
1200 members of the Foundation with OI, and another 700 persons who
are not members but are part of their National Registry.

So if you and would like more information about OI, or you as a physician
see patients/clients with OI, please let them know about the Osteogenesis
Imperfecta Foundation.  Their address is:

      Osteogenesis Imperfecta Foundation, Inc.
      5005 W. Laurel Street, Suite 210
      Tampa, FL  33607

      (813) 282-1161

The OIF publishes a quarterly newsletter, _Breakthrough_, which is
sent to all members of the Foundation or may be subscribed to
($7.50) independent of membership.  

You may contact the Osteogenesis Imperfecta Foundation directly or
respond to me via e-mail.  Across the country, OIF has a parent/peer
contact network, many support groups, a medical referral list of
practitioners treating patients with OI, bieenial conferences for
persons with OI and their families/caregivers, workshops for
medical persons, assistance with child abuse cases where OI is
involved, newsletters and literature, funding research into the
causes and treatments of OI, etc.

Please help me spread the word about osteogenesis imperfecta.

Thank you for your attention.

Jean Jasinski
Regional Manager for the Osteogenesis Imperfecta Foundation

You might want to add more details on what OI is and what the current issues
about OI are.

Osteogenesis Imperfecta is also known as brittle bone disease, although
disorder would be a more correct term than disease.  

The hallmark features of OI are fractures without significant trauma,
blue sclera (whites of eyes), loose joints and ligaments, triangular shaped face,
sometimes there is growth impairment (dwarfism) and/or bowing of the long bones,
a high-pitched voice, easy bruising, sweating.

The biggest social problem with OI is that it is often mistaken for child abuse
(as it was in our case when our daughter fractured her second tibia by her first
birthday).  The medical problems can be numerous and vary greatly in their
severity.

OI is a genetic condition although it is often the result of a new genetic mutation.

Medical personnel:  if you see children exhibiting these symptoms, please consider
OI as a possible cause.  If you see infants who are born with fractures or show
healing fractures that were suffered in utero, please consider OI.

There is a diagnostic test which is 90-95% accurate.  It involves a punch biopsy
and culturing the fibroblasts to see what the resultant collagen looks like.  OI
is caused by an insufficient amount of normal collagen, or a normal amount of
defective collagen.  OI can be detected in-utero by either amnio or CVS or by
looking for fractured femurs, but the severity of the disorder cannot be predicted.

The Osteogenesis Imperfecta Foundation has a medical advisory board that can assist
you in making diagnoses from X-rays (sometimes), family history, and symptoms.
(The skin biopsy diagnostic test takes several weeks and is expensive.)  

Sermon over,
Jean Jasinski

Osteogenesis Imperfecta is also known as brittle bone disease, although
disorder would be a more correct term than disease.  

The hallmark features of OI are fractures without significant trauma,
blue sclera (whites of eyes), loose joints and ligaments, triangular shaped face,
sometimes there is growth impairment (dwarfism) and/or bowing of the long bones,
a high-pitched voice, easy bruising, sweating.

The biggest social problem with OI is that it is often mistaken for child abuse
(as it was in our case when our daughter fractured her second tibia by her first
birthday).  The medical problems can be numerous and vary greatly in their
severity.

OI is a genetic condition although it is often the result of a new genetic mutation.

Medical personnel:  if you see children exhibiting these symptoms, please consider
OI as a possible cause.  If you see infants who are born with fractures or show
healing fractures that were suffered in utero, please consider OI.

There is a diagnostic test which is 90-95% accurate.  It involves a punch biopsy
and culturing the fibroblasts to see what the resultant collagen looks like.  OI
is caused by an insufficient amount of normal collagen, or a normal amount of
defective collagen.  OI can be detected in-utero by either amnio or CVS or by
looking for fractured femurs, but the severity of the disorder cannot be predicted.

The Osteogenesis Imperfecta Foundation has a medical advisory board that can assist
you in making diagnoses from X-rays (sometimes), family history, and symptoms.
(The skin biopsy diagnostic test takes several weeks and is expensive.)  

Sermon over,
Jean Jasinski
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