REDY ry

REDY ry was founded in October 1999 to provide knowledge and to act as a connection between persons with diagnosed Rapadilino, Erb's palsy, or congenital deficiencies or anomalies (dysmelia or dys melos, in Latin), and their families.

REDY ry was accepted as a member association of Invalidiliitto ry - the Finnish Association of People with Mobility Disabilities (FMD) in 2002. Through such a larger association REDY ry has much better chances and resources to share knowledge and make our voice heard. In addition, REDY ry participates in the work of the "Small and Rare" workgroup, a co-operation organ for FMD's member associations of small and rare diagnoses.

There are more than 200 members in our association. Our activities are solely based on voluntary work. REDY ry is keeping touch with foreign associations to get, among other things, the latest information concerning association's diagnoses.

Rapadilino

Rapadilino is a rare hereditary, syndrome causing malformations. There are specific exterior features, shorter body height, limb malformations and shortage. However, the syndrome does not affect the brain and, thus, intelligence and cognitive development are normal.

Syndrome features and developmental disorders (resulting in the name of the syndrome):


RA radial aplasia / hypoplasia

PA absent patella / high arched palate

DI diarrhea / dislocated joints

LI little size / limb malformations

NO long nose / normal intelligence

Rapadilino is a vey rare syndrome. There are only about 20 people affected by it in Finland (in a population of approx. 5 million). On average, only 0.8 out of 100 000 live born children has this syndrome.

Erb's Palsy

In Erb's Palsy (birth defect of the shoulder nervous plexus) nerves and/or nerve roots in the shoulder nervous plexus suffer damage during delivery. The nerves are strecthed and possibly broken, and/or the nerve roots are damaged, as well; sometimes the nerves even torn from the spine. The damage can be extensive, affecting all muscles in the upper limb, or limited, thus affecting only some upper limb muscles. In the early phase the symptoms range from full paralysis of the upper limb (humeral articulation, elbow joint) to a fully functional upper limb with a lack of feeling. In milder cases the damage is somewhat healed during the first months, and sometimes surgical operations are needed to increase functionality. Some children will, however, have permanent functional disorders (varying levels of muscle weakness, lack of feeling, resticted functionality), affecting throughout the life.

Dysmelia

Dysmelia is a common name for a set of congenital anomalies or deficiencies or amputations, characterised by missing or shortened extremities or parts of them, and sometimes spinal or internal organ anomalies. The level of damage ranges from the malformation of one finger to the lack of all limbs. Usually it is a question of a hand or an arm being malformed or missing some part(s). People experience their defect very differently even if the level of their damage is the same.

In Finland 60-80 children born every year with some level of Dysmelia. Usually the damage is not extensive, for example child may only have a 6th finger, and only a few children per year have extensive damage or damage in multiple limbs. There are no differences between girls and boys concerning the incidence of this syndrome.

REDY Chairman:
Vesa Nopanen
gsm: 0400 - 757 333
e-mail: vesa.nopanen(a)redy.info (note: replace (a) with @)
address:
Kotipellontie 7
12700 Loppi
Finland