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Ectrodactyly: The congenital absence of all or part of one o
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Transcript
Ectrodactyly/Lobster Claw Syndrome
Who suffers from this disorder?
- Occurs once every 90,000 births.
- There is a 50-50 chance the offspring of a person with this disorder will inherit it.
- There is no definite record as to which gender is most affected.
Current Research
Genetics of Disorder
Personal Story
- Doctors perform surgeries to normalize the appearance of the hands and/or toes.
- It is linked to the mutation
of the seventh chromosome.
- Bree Walker is an American radio talk show host, actress, and disability-rights activists.
- She was born Patricia Lynn Nelson on February 26, 1954 in Oakland,California and raised in Austin, Minnesota.
- People who have this condition and have children are most likely to pass it on to them.
Personal Life cont...
History/Background
- Her son and daughter also have ectrodactyly.
- She had a strong reaction on her blog to Oprah Winfrey's statement that "normal" children have all their fingers and toes.
- The first reference to what might be considered a cleft hand was by Ambroise Paré in 1575.
- Hartsink (1770) wrote the first report of true cleft hand.
- The first certain description of a cleft hand as we know it today was described at the end 19th century.
Bree Walker
Ectrodactyly on the hand of a
one-year-old child
Prognosis
Symptoms
Treatments Currently Available
- It rarely presents as a significant health risk.
- The hand deformation alone is unlikely to affect health.
- Malformations of the hands and/or feet
- Usually the middle finger or toe is missing and two fingers or toes are fused together.
- Surgery may normalize the appearance of the hands, yet they will not function precisely the same way as normal hands.
- Early physical therapy can help individuals adapt, learn to write, pick things up, and be fully functional.
Sources:
http://en.wikipedia.org/wiki/Ectrodactyly
http://www.wisegeek.org/what-is-ectrodactyly.htm#
What Struck Us Most
For More Information...
http://www.streetdirectory.com/travel_guide/113275/medical_conditions/ectrodactyly__information_treatment__prevention.html
People with this disorder can
actually live a normal life although there hands/or feet cant work to their full potential.
- Organizations Providing General Support:Genetic Alliance
Washington, DC
Telephone: 202-966-5557
E-mail: info@geneticalliance.org
Website: http://www.geneticalliance.org/
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