Belangenvereniging van Kleine Mensen

Last updated
Belangenvereniging van Kleine Mensen (BVKM)
Founded1973
FocusThe bvkm provides information about disability rights, medical issues, and practical matters for patients with skeletal dysplasia.
Location
Area served
Netherlands
Members
350 (July 2023)
Website http://www.bvkm.nl/

The Belangenvereniging van Kleine Mensen (BVKM)(English: Interest Association of Little People) is the Dutch Patients' Organization for little people and patients with skeletal dysplasia. [1] [2] The association focuses on individuals with one or more of the two hundred medical conditions falling under the category of dwarfism. [3] Most members have a demonstrable growth disorder and are shorter than 155 cm. [4] [5] Volunteers are responsible for the organization.

Contents

Establishment

The BVKM was founded in December 1973 by Lenie Voorn (née Matton), [6] as a Dutch organization providing support and information to people of short stature and their families. Within a year and a half of its establishment, 500 little people had become members, and the association now had a social worker and a psychologist. It became clear that the challenges for little people were much larger than initially thought. Housing, clothing, public transportation, and job applications turned out to lead to many mental and practical problems. [7]

Goals

The main goal of the association is to provide support to little people so that they can take a full and equal place in society. [8] [9] [10]

Other goals of the association include: [8]

Activities

Members and directly involved individuals can receive information, get to know each other, and share experiences, with the association playing a supportive role. [13] [14]
The association focuses on increasing general knowledge about various growth disorders, striving for equal treatment in society, and advocating for normalization that embraces diversity [12] [15] [16]

The Sports Committee organizes events in collaboration with entities such as the Dirk Kuyt Foundation and De Hoogstraat Rehabilitation. [17]

Collaborations

The association, as a patient organization for skeletal dysplasia, maintains close contact with institutions such as Wilhelmina Children's Hospital, UMCU, MUMC+, and LUMC. [18]

Partners

The BVKM collaborates with external parties, including:

Sister associations

Sports associations

Related Research Articles

Achondroplasia is a genetic disorder with an autosomal dominant pattern of inheritance whose primary feature is dwarfism. In those with the condition, the arms and legs are short, while the torso is typically of normal length. Those affected have an average adult height of 131 centimetres for males and 123 centimetres (4 ft) for females. Other features can include an enlarged head and prominent forehead. Complications can include sleep apnea or recurrent ear infections. Achondroplasia includes the extremely rare short-limb skeletal dysplasia with severe combined immunodeficiency.

<span class="mw-page-title-main">Dwarfism</span> Small size of an organism, caused by growth deficiency or genetic mutations

Dwarfism is a condition wherein an organism is exceptionally small, and mostly occurs in the animal kingdom. In humans, it is sometimes defined as an adult height of less than 147 centimetres, regardless of sex; the average adult height among people with dwarfism is 120 centimetres (4 ft). Disproportionate dwarfism is characterized by either short limbs or a short torso. In cases of proportionate dwarfism, both the limbs and torso are unusually small. Intelligence is usually normal, and most have a nearly normal life expectancy. People with dwarfism can usually bear children, though there are additional risks to the mother and child depending upon the underlying condition.

<span class="mw-page-title-main">Ellis–Van Creveld syndrome</span> Medical condition

Ellis–Van Creveld syndrome is a rare genetic disorder of the skeletal dysplasia type.

<span class="mw-page-title-main">Thanatophoric dysplasia</span> Severe form of genetic dwarfism that is usually lethal

Thanatophoric dysplasia is a severe skeletal disorder characterized by a disproportionately small ribcage, extremely short limbs and folds of extra skin on the arms and legs.

Kniest dysplasia is a rare form of dwarfism caused by a mutation in the COL2A1 gene on chromosome 12. The COL2A1 gene is responsible for producing type II collagen. The mutation of COL2A1 gene leads to abnormal skeletal growth and problems with hearing and vision. What characterizes Kniest dysplasia from other type II osteochondrodysplasia is the level of severity and the dumb-bell shape of shortened long tubular bones.

Spondyloepiphyseal dysplasia congenita is a rare disorder of bone growth that results in dwarfism, characteristic skeletal abnormalities, and occasionally problems with vision and hearing. The name of the condition indicates that it affects the bones of the spine (spondylo-) and the ends of bones (epiphyses), and that it is present from birth (congenital). The signs and symptoms of spondyloepiphyseal dysplasia congenita are similar to, but milder than, the related skeletal disorders achondrogenesis type 2 and hypochondrogenesis. Spondyloepiphyseal dysplasia congenita is a subtype of collagenopathy, types II and XI.

<span class="mw-page-title-main">Spondyloepimetaphyseal dysplasia, Strudwick type</span> Medical condition

Spondyloepimetaphyseal dysplasia, Strudwick type is an inherited disorder of bone growth that results in dwarfism, characteristic skeletal abnormalities, and problems with vision. The name of the condition indicates that it affects the bones of the spine (spondylo-) and two regions near the ends of bones. This type was named after the first reported patient with the disorder. Spondyloepimetaphyseal dysplasia, Strudwick type is a subtype of collagenopathy, types II and XI.

<span class="mw-page-title-main">Hypochondroplasia</span> Medical condition

Hypochondroplasia (HCH) is a developmental disorder caused by an autosomal dominant genetic defect in the fibroblast growth factor receptor 3 gene (FGFR3) that results in a disproportionately short stature, micromelia and a head that appears large in comparison with the underdeveloped portions of the body. It is classified as short-limbed dwarfism.

Chondrodystrophy refers to a skeletal disorder caused by one of myriad genetic mutations that can affect the development of cartilage. As a very general term, it is only used in the medical literature when a more precise description of the condition is unavailable.

Osteochondrodysplasia is a general term for a disorder of the development (dysplasia) of bone ("osteo") and cartilage ("chondro"). Osteochondrodysplasias are rare diseases. About 1 in 5,000 babies are born with some type of skeletal dysplasia. Nonetheless, if taken collectively, genetic skeletal dysplasias or osteochondrodysplasias comprise a recognizable group of genetically determined disorders with generalized skeletal affection. Osteochondrodysplasias can result in marked functional limitation and even mortality.

<span class="mw-page-title-main">Pseudoachondroplasia</span> Inherited disorder of bone growth

Pseudoachondroplasia is an inherited disorder of bone growth. It is a genetic autosomal dominant disorder. It is generally not discovered until 2–3 years of age, since growth is normal at first. Pseudoachondroplasia is usually first detected by a drop of linear growth in contrast to peers, a waddling gait or arising lower limb deformities.

<span class="mw-page-title-main">Fibroblast growth factor receptor 3</span> Gene involved in the most common form of dwarfism

Fibroblast growth factor receptor 3 is a protein that in humans is encoded by the FGFR3 gene. FGFR3 has also been designated as CD333. The gene, which is located on chromosome 4, location p16.3, is expressed in tissues such as the cartilage, brain, intestine, and kidneys.

<span class="mw-page-title-main">Boomerang dysplasia</span> Medical condition

Boomerang dysplasia is a lethal form of osteochondrodysplasia known for a characteristic congenital feature in which bones of the arms and legs are malformed into the shape of a boomerang. Death usually occurs in early infancy due to complications arising from overwhelming systemic bone malformations.

The Restricted Growth Association (RGA) is a UK charity that supports people with dwarfism.

Acromesomelic dysplasia is a rare skeletal disorder that causes abnormal bone and cartilage development, leading to shortening of the forearms, lower legs, hands, feet, fingers, and toes. Five different genetic mutations have been implicated in the disorder. Treatment is individualized but is generally aimed at palliating symptoms, for example, treatment of kyphosis and lumbar hyperlordosis.

<span class="mw-page-title-main">Severe achondroplasia with developmental delay and acanthosis nigricans</span> Medical condition

Severe achondroplasia with developmental delay and acanthosis nigricans (SADDAN) is a very rare genetic disorder. This disorder is one that affects bone growth and is characterized by skeletal, brain, and skin abnormalities. Those affected by the disorder are severely short in height and commonly possess shorter arms and legs. In addition, the bones of the legs are often bowed and the affected have smaller chests with shorter rib bones, along with curved collarbones. Other symptoms of the disorder include broad fingers and extra folds of skin on the arms and legs. Developmentally, many individuals who suffer from the disorder show a higher level in delays and disability. Seizures are also common due to structural abnormalities of the brain. Those affected may also suffer with apnea, the slowing or loss of breath for short periods of time.

<span class="mw-page-title-main">Short-limb skeletal dysplasia with severe combined immunodeficiency</span> Medical condition

Short-limb skeletal dysplasia with severe combined immunodeficiency is an extremely rare autosomal recessive type of achondroplasia which is characterized by short stature, bowing of the long bones, and generalized metaphyseal abnormalities alongside signs of SCID such as recurrent severe infections, failure to thrive, chronic diarrhea, and a notable absence of T and B lymphocytes. Around 11 cases have been described in medical literature.

<span class="mw-page-title-main">Schneckenbecken dysplasia</span> Medical condition

Schneckenbecken dysplasia is a rare pre-natally fatal hereditary autosomal recessive condition which affects the bones and pre-natal growth.

<span class="mw-page-title-main">World Dwarf Games</span>

The World Dwarf Games (WDG) are a multi-sport event for athletes of short stature. The WDG have been held every four years since 1993 and are the world's largest sporting event exclusively for athletes with skeletal dysplasia. Many Paralympians with growth disorders start their sports careers here.

The Skeletal Dysplasia Alliance is an organization dedicated to advocating for individuals with conditions such as Achondroplasia and other Skeletal Dysplasias with Dwarfism (ASDD) across Europe. In the context of global advancements in recognizing the rights of people with disabilities, the alliance emphasizes the unique needs of the ASDD community that have historically been overlooked.

References

  1. ↑ VOORBEHOUDEN, INSERM US14-- ALLE RECHTEN. "Orphanet: BVKM Belangenvereniging van Kleine Mensen". www.orpha.net (in Dutch). Retrieved 2023-11-20.{{cite web}}: CS1 maint: numeric names: authors list (link)
  2. ↑ "Growth Disorders: information about organizations". www.patientenfederatie.nl. Retrieved 2023-11-20.
  3. ↑ "Osteogenesis imperfecta (OI) | Erfelijkheid.nl". www.erfelijkheid.nl. Retrieved 2023-11-19.
  4. ↑ "Interest Association of Little People". Nuenen Helps (in Dutch). Retrieved 2023-11-20.{{cite web}}: Check |url= value (help)
  5. ↑ "Achondroplasia | Erfelijkheid.nl". www.erfelijkheid.nl. Retrieved 2023-11-19.
  6. ↑ Association of Little People De tijd : newspaper for the Netherlands (3 November 1973)
  7. ↑ Little people often have big problems Nieuwsblad van het Noorden (21 January 1974)
  8. 1 2 "Social map Netherlands | Interest Association of Little People (BVKM)". landelijk.socialekaartnederland.nl. Retrieved 2023-11-20.
  9. ↑ "'I consciously don't call myself a little man because I am not my limitation'". de Volkskrant. 1 March 2022. Retrieved 2023-11-19.
  10. ↑ Draftee is discriminated against for height Dagblad Trouw (7 December 1979)
  11. ↑ Zeldzaam, Zicht op. "Interest Association of Little People". Zicht op Zeldzaam (in Dutch). Retrieved 2023-11-21.
  12. 1 2 "We stand up against prejudices" by Marijke Hultzer. "De Telegraaf". Amsterdam, 2 June 1979, p. 19. Retrieved from Delpher on 21 November 2023, https://resolver.kb.nl/resolve?urn=ddd:011200356:mpeg21:p019
  13. ↑ "About SD Alliance". Skeletal Dysplasias Alliance. Retrieved 2023-11-19.
  14. ↑ "Speaker's Corner" about little people Leeuwarder Courant (1 December 1977)
  15. ↑ "Achondroplasia: big stigmas but not to belittle". Planet Health (in Dutch). 26 September 2023. Retrieved 2023-11-20.
  16. ↑ Information about organizations Knowledgebank.patientenfederatie.nl
  17. ↑ "Skeletal Dysplasia in children". De Hoogstraat Rehabilitation (in Dutch). Retrieved 2023-11-19.
  18. ↑ Achondroplasia, Expertise Network. "University Medical Center Utrecht". Expertise Network Achondroplasia (in Dutch). Retrieved 2023-11-20.

Sources

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