Osteogenesis Imperfecta (OI) is a rare heritable disorder of the connective tissue. The most prominent feature of OI is bone fragility. The number of fractures can vary from a few to over a hundred.
Other possible symptoms include:
- small stature
- bone deformities
- hearing loss
- abnormal teeth
- blue sclerae
- muscular weakness
- extreme laxity of the joints
- excessive sweating
- easy bruising
- basilar impression
- heart valve insufficiency
- extreme tiredness
A person with OI may show several but usually not all of these symptoms. OI expresses itself very individually. It does not affect intellectual development.
The Finnish Osteogenesis Imperfecta Association
The Finnish Osteogenesis Imperfecta Association was founded in 1979. It is one of the oldest OI societies in Europe. As in many other countries, it was originally founded by a group of families who had children with OI. At the time, they felt that it was very difficult to find information about the disease and they wanted to get to know other people with the same problems.
At the moment the Association has about 300 members. About half of them have OI themselves, the rest are family members, friends, doctors and other health care professionals. Anyone interested in OI can join the Association. As Finland has about 5 million inhabitants, it has been estimated that there would be about 300-350 people with OI in Finland.
The main objectives of the Association are:
- to collect, publish and exchange information about OI
- to offer people with OI a change to meet each other
- to promote public awareness of as well as research on OI
The Association has two meetings a year, a one-day spring meeting and a two-day autumn meeting. In addition, it organises adaptation training and rehabilitation courses for its members.
The Association gets funding from the National Lottery Association. A smaller part of the finance comes from membership fees, donations and selling adds to the newsletter. The funding is used mainly to pay for the meetings and running costs. All activities are done on voluntary basis; there is no paid personnel. The Association co-operates with other associations for rare diseases. It is a member of both OIFE (Osteogenesis Imperfecta Federation Europe) and OI-Norden, an organisation of OI associations in the Nordic countries.
Contact
Contact the Finnish OI Association
sihteeri(at)oi-yhdistys.fi
Please replace (at) with the symbol @
For more information about Osteogenesis Imperfecta in English, see OIFE.