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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25
Sorry cReep, I seem to have referred to my 3 daughters as perfect too. Of course I only meant physically and in the context of this discussion board. Funny how even the word "normal" can sound slightly inappropriate when talking about any disability. From your description your hands and feet seem to be very, very similar to mine. Apparently there is a small area in Africa where a very high proportion of the population have ectrodactyly. I had been thinking of visiting the area until I discovered it's actually in Zimbabwe. Not a very safe place. If you're ever in Ireland we could meet up if you like. - Martin4313
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I was born with fullblown Ectrodactyly, Ectodermal Dysplasia-Cleft (EEC) syndrome, and was lucky enough to get a good surgeon who worked on my lip/palate well. My father being african american, black hair, my mother being white with brown hair, i came out white and blonde, neither of my parents or anyone in either of my immediate families have similiar problems (though one of my aunts has CF, a mutation that also takes place on the same chromosome). I grew up a normal child, becoming expecially interesed in video games and computers, though I have a bit of a sporty side. Though I have a few memories of being picked on for my hands when I was little, I dont have a problem making friends or socializing (that may be because of my socialable nature) I am very conscious of peoples stares, and it really annoys me, though I know I'd do the same if it were the opposite scenario. I have 3 fingers on each hand, the left hand having two fused fingers. My left foot has only two toes, on my right I have what looks to be a normal foot, though I am missing 1 toe. I am soon to graduate high school, and have no idea what I shall major in in college. I would really like to have children, but I imagine it would be truly hard to being the reason my child is different than everyone else, this being the reason I don't plan on having children (though I know no one is the same or "normal").
I took great pleasure in reading the other posts, because I haven't ever known anyone with the same problems I do. I found it particularly interesting upon reading one of the anon's posts, with her constant repetition of her being born "perfect"..I took somewhat offense. Anywho, hope this helps :) *edit** -forgot to include that though I was told that I should have poor working sweat glands, they are for the most part normal. Also, my mother was also told that i'd have sparse hair, which was also wrong. I have normal skin (although somewhat dry); had extensive dental/ortho work; poor working/only one working kidney. Any other questions feel free to ask. - cReep
22
Hi Occupational Therapist. When I was about kindergarten age I remember my mother bringing me to what must have been an Occupational Therapist to work on my hands and feet. I had had both hands and feet sewn in various ways shortly after I was born. I may or may not be able to help but all cases are slightly different. I think this site should allow photos. I would be happy to help out if I can but how can I do that on this site without pictures. Obviously the parents of the child should be involved. - Martin4313
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Hi all, I am an Occupational Therapist at a school site and will have a Kindergarten child with this diagnosis affecting both of his hands. I have not seen this before so I would like to know if any parents or people had adaptive equipment that helped them ion the classroom. I am ordering spring loaded small scissors and am thinking of rubber tubing to build up a pencil grip. Did any of you have a hand splint? If so can you tell me more.
Thanks for your help. --Marie OTR/L - anon40362
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Hi anon32181. It might help you to read my posts, see Martin4313. I have digits missing on both hands and both feet and I have 3 perfect daughters. - Martin4313
19
this is a picture of my boyfriends hand, he has ectrodactyly mutant type b and it's only on one hand. nobody else in his family has it and his mother was healthy and did everything she could to have the best pregnancy but he still ended up with this. we want to have children so what are the chances of him passing it down? thanks! - anon32181
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I have 3 daughters now aged 13, 8 & 6. My eldest never asked me about it. The middle one I think asked only once and the youngest teases me by asking quite often. The answer I have always given children is God forgot to finish me. It seems to satisfy them. If you can find something you can do better than them it should help. And it doesn't necessarily have to be to do with your hands. - Martin4313
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I have it and I'm 10 and female. This year my class is composite, I'm yr 6 and yr 5's are now forever questioning me and I don't have a good excuse for it. If anybody has one please let me know. Thanks. My friend suggested this:"why do you have 3 fingers?" "why do you have 5?" Bye! - anon31652
16
Yes, it is a dominant gene. And if it didn't pass on from your parents, then it means you were the first genetic mutation. The same thing happened with my son. He is adopted, but nobody in his birth family has it, including his parents. So his hand surgeon at the Shrine Hospital in Portland said that he had the first mutated gene in his family. They don't know why that happens out of the blue. - Myers0
15
One more thing. You said "It is not recessive." Does that mean I am carrying a dominant gene for ectrodactyly? - musicalbaby
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Myers0,I do have it, but both my daughter and my husband do not. I guess since I do have it then my next child will have a 50/50 chance of getting it as well. - musicalbaby
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Musicalbaby,We were told by the hand specialist that there is a 50-50 chance of having a baby with the same disorder. But it is not recessive. So if you are a family member of a person with ectrodactyly, but don't have it yourself, then you cannot pass it on. So your child that *doesn't* have it, cannot pass it on. Only if you actually have it, can you pass it on. - Myers0
12
I was born with ectrodactyly, and grew up not knowing I was any different until 5th grade when a classmate called me "ET" on the playground. That was the turning point for me. From then on I started hiding my hands, and my parents hated that I did that. Well, a bachelors and masters degree later, I am a first teacher and embrace any child that is different. *No* student of mine has ever made fun of me in the 5 years I have taught. My students actually take up for me if they hear someone from another class say anything. I love my babies. Anyways, I am married to a wonderful man, and we have a beautiful 11 month old who does *not* have ectrodactyly. We are planning for baby #2, and I was wondering what the chances are for that baby having it. I am the only one in my family who has this, and no one in my husband's family has it. Does anyone know? - musicalbaby
11
I was born in 1952 with atypical tetra ectrodactyly i.e missing digits on both hands and both feet. I am the eldest of 5 children (4 boys & 1 girl). None of my siblings have it. One brother has no children, one has 3 girls, one has 3 boys and my sister has 1 boy and 1 girl. None of them have it. I have 3 girls and none of them have it. It does not exist anywhere in my extended family and none of them has any recollection of it existing in any previous generations. I'm better at most things than my siblings, except sport but this seems to be only because I have never had any interest in any sport. I am better with my hands than most people. I have built a boat, refurbished houses and traveled to more than 60 countries, many of them by bicycle. If anyone I know has a computer problem they call me for help. I am shy by nature which may or may not be to do with my ectrodactyly. Apart from playing musical instruments I see no need for more than 2 fingers and a thumb. I hope this encourages anyone with a newborn child with ectrodactyly although obviously it depends exactly how the hands and feet are formed. A doctor in South America once told me there could be a connection to potatoes. Potatoes originate in South America and I am Irish. Seems odd to me though and I never came across this anywhere else. - Martin4313
10
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. - Myers0
9
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... - anon21674
8
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. - cclack
7
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. - Myers0
6
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. - anon20657
5
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. - anon18594
4
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. - cclack
3
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! - Myers0
2
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. - anon16531
1
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. - Myers0
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Tricia Ellis-Christensen
Last Modified: 10 August 2009
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