What is Ectrodactyly?

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Ectrodactyly is a birth defect that causes malformation of the hands and/or feet. In this condition, the middle finger or middle toe is missing. As well, the two fingers or toes to the right and left of the missing finger are fused together. This has often led to ectrodactyly being called lobster claw hands, or lobster claw syndrome, because the hand malformation does bear some similarity in appearance to the claws of a lobster.

Currently there are several treatments, which can normalize the appearance of the hands, yet they will not function precisely the same way as regularly formed hands. Some people with ectrodactyly use prosthetic hands to avoid the rude stares of others.

Early physical and occupational therapy can help those with ectrodactyly adapt, and learn to write, pick things up, and be fully functional. Yet stigma from this condition remains since the hands do not appear normal.

Ectrodactyly is relatively rare, occurring about once in 90,000 births. It does have several types, and all of them are genetic. However, inheritance of the condition happens rarely. Those who have ectrodactyly or have children with the condition are at increased risk for passing it onto future children.

One type of ectrodactyly, the most common, is specifically linked to the mutation of the seventh chromosome. Geneticists found the condition to occur in both humans and insect populations directly because of the mutated chromosome. As yet, there is no way to prevent the mutation of the chromosome, which can be inherited from either parent.

Ectrodactyly may be present alone, or may be part of a number of birth defects. Hand deformation alone is unlikely to affect health. However, as part of a syndrome, such as Ectrodactyly, Ectodermal Dysplasia-Cleft (EEC) syndrome, health can be significantly affected.

In EEC ectrodactyly, cleft palate, and malformation of the sweat glands are all present. Medical interventions are required to help preserve the skin that suffers from the lack of sweat glands and becomes brittle. As well, surgical repair is required on the palate. Those undergoing repair often require lengthy speech therapy as well as physical therapy.

Bree Walker, a well-known San Diego, California newscaster, did a great service to those with ectrodactyly by disclosing that she has the condition. In the past she had used prosthetic hands, so as not to attract notice. However in 1988, she went public with her condition, which has helped to eliminate the discomfort some feel around others with this hard to miss deformity.

Walker has also embraced her ectrodactyly and appeared as an actress in several programs. She recently starred in Nip Tuck of the Fox Network, in a story arc surrounding the birth of a child with ectrodactyly. As well she played the Scorpion Lady in the Showtime’s Carnivale.

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New: Discuss this Article

Posted by: Myers0
If your husband does not have it, he is not carrying the gene, so it cannot be passed on. His sister's children have a 50-50 chance of having it.
Posted by: anon21674
If Im planning to have children with a person that has a sister with electrodactyly , I want to know the probability to have my own children with this problem, maybe my husband do not has the malformation but his sister has it so, ¿Can somebody tell me the probability of this?

thanks...

Posted by: cclack
My first son has it but my second does not. I went to a genetesis when my first son was born and they told me that if I had another child that did not have it that they would not pass it on. I have always planned to go and get a second opinion on that so there are no surprises. It is worth checking out before going thru a very expensive procedure. My boys are 11 and 12 so I have not checked recently but I plan to.
Posted by: Myers0
I agree with anon20657, that the best way to deal with ectrodactyly is to act as if it is no big deal. My son, now 20, also has had very few negative comments throughout his growing up years.

I am confused, though, because my research and also what our Dr. told us that it is a dominant gene, so if you don't have it, like anon20657, then there is no way to pass it on. I'm surprised a Dr. told her that.

It is not recessive. So if she had the gene, it would have shown up with her somewhere. Since she is perfect, she does not have the gene, and can not pass it on. A person who does have it, has a 50-50 chance of passing it on. Anon20657 may want to check this out, because I think there is no chance of her passing it on.

Posted by: anon20657
My 3 brothers have electrodactyly on hands and feet. I'm the only girl and I always felt guilty for being perfect, but as for them, they grew up as normal people, they can do absolutely everything. I think people make a big deal about it because the think what it would be like if they lost their fingers and toes, but for someone that never had normal hands and feet, they don't suffer the way we think they do.

My brothers never had any problem with it, they never suffered any kind of prejudice, not even in school where kids can be really mean, they were never ashamed of it and never tried to hide it or considered surgery. They just accept themselves as they are.

A doctor told us that when we're ready to have kids, that includes me because I could carry the damaged gene even though I was born perfect, we have the choice to do an in vitro fertilization if we want to have a perfect child. We're all in college now, so we'll be facing this issue in the next 5 - 10 years.

Posted by: anon18594
Me and my husband have a child who is 20 months old, and was born w/ ectrodactyly syndrome on his right hand, no one has ever put a name to it before, I just happened to catch the episode of my Unique Family on TLC. As far as we know, after talking to a hand specialist and genetics counselor it was not passed on from either of us, however my grandfather and first cousin have cleft palate syndrome. I love my son regardless, but I fear for the day when he will understand that other people see him as different any good advice for dealing w/ people ignorance I would love to hear it.
Posted by: cclack
My husband was born with ectrodactyly and had it no were in his family. He was told that he got it from a drug his mom took while pregnant. We did not know it was genetic until I was pregnant with my first son who got it. We went to a geneticist and she verified that he was the first in the family to have this and it was caused from a mutant gene. My husband lived his whole life normally, he was on all-stars for baseball. Can plays any sport equally or better than most. He bowls with a 200 average. My son is not so fortunate with the athletic talent. He plays baseball, football and soccer and holds his own. He's not the best but he's not the worst either. Last year he batted 2nd on his baseball team and played second base. They were undefeated. This was a great thing for his self confidence. This is a really hard thing to have because of the ignorant people in this world. But if you treat it like its no big deal you will find that most people will do the same. I would like to say it is great to talk someone who can relate. Good luck to you all.
Posted by: Myers0
Our son is 19 now, and has just 2 big toes on each foot. After 4 surgeries when he was very young, he has 3 normal fingers on each hand and short thumbs. But he ran track in high school,and also had one of the fastest typing speeds. It hasn't slowed him down at all. Now he is in college and doing well. The Dr.s say he is the first "mutation" since it doesn't run in the family at all. There is a 50-50 chance of his offspring having it. Good luck to you and your son. With the right attitude, it is really no big deal!
Posted by: anon16531
My son was electrodactyly...and we find no history of it in our family heritage. We have been to several specialist and can not track it in either my family or my husbands....In my mind I'm content with accepting it was a freak chromosome mutation. My son is active and healthy in everyway. He is missing middle digits on both hands and both feet.
Posted by: Myers0
Just wondered if there is anyone else out there with ectrodactyly that was not inherited. My son is adopted but nobody in his birth family has it.

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