I absolutely hate the name "lobster claw syndrome." I meant there are two digits where a thumb should be. Ectrodactyly Share on Facebook Share on Twitter Share on Pinterest Email Print Also called lobster claw syndrome, a condition that causes fingers, toes or limbs to be missing or fused together. thanks. One more thing. Tiny nails. he is 3 1/2 years old, and he has his middle finger missing from both hands. I am 25 years old and have two children, a boy and a girl, who was blessed on not having the problem I have. The other three are not. Also if you watch too much American Horror Story. The inner one doesn't have much strength. How can we make her stop hiding her hand though? I wanted to do more research. The hereditary condition called split-hand/split-foot malformation and sometimes called lobster-claw deformity is also termed ectrodactyly, as does another hereditary disorder called the EEC syndrome. I don't think anybody could write like me. In fact, the opposite was the case. There is no family history of ectrodactyly. If you would like to talk, just send me an email. All contents of this site are Copyright © 2014 of AchhaBachha - The Healthy Kid. working on her first novel. At birth, about 1 out of 18,000 newborns are born with this disability around the world. His sister's children have a 50-50 chance of having it. This involved closing the slit between big toe and little with tendons from up the back of his legs and also straightening his big toe. We were told by the hand specialist that there is a 50-50 chance of having a baby with the same disorder. 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 hope I am the right person to talk about his ectrodactyly experiences. The big toe on my right foot is also dislocated and needs surgery. Camptodactyly does not cause swelling, inflammation or warmth to the area. Then that would get bad. Last year we were having such a hard time with shoes because one foot was wider than the other and he needed different shoe sizes if I could find a shoe wide enough to fit his right foot. If so, at what age did they have surgery and have they faced any other complications after treatment like problems with walking? Thank you for offering this support site. My one piece of advice to any parent out there hurting for their child’s “difference” is to treat their condition with indifference. It was my mum's idea, and yes, it did work for me. It hasn't slowed him down at all. I had my first child at 21 and was so scared he would came out like me and have issues like I did growing up. Cleft hand can occur in isolation or as part of a genetic syndrome, such as cleft lip and palate or ectrodactyly (split hand-split foot malformation). I have come to the conclusion myself that, as parents, we should accept his difference ourselves firstly. Can something be done to help him? 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. We are blessed to be our own support group! Does that mean I am carrying a dominant gene for ectrodactyly? There is a 50-50 chance of his offspring having it. Thanks, been there and lived it, know it and still feel it. My son was electrodactyly...and we find no history of it in our family heritage. My hands are fine and no one else in my family has the condition. We are planning for baby #2, and I was wondering what the chances are for that baby having it. 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. None of my mom's siblings that have it, my siblings, or my nieces and nephews have exactly the same looking hands and feet. Well he has the finger, but it's inside his hand and has fused together with his index finger. It is so wonderful to have the opportunity to write on such a special website. There is a small boy 11 years in Shillong, India who wishes to be a commando in the army, but he has only three fingers on his left hand by birth. The severity of this condition varies widely among affected individuals. I have always planned to go and get a second opinion on that so there are no surprises. When I got in high school my life got so much easier, no name calling and people actually liked me for me. The disorder shows variable expressivity and reduced penetrance. this is a picture of my boyfriends hand, he has ectrodactyly mutant type b and it's only on one hand. Everything I see is different from him in some way or another. This is why most cases of ectrodactyly are generally accompanied by another abnormality or linked to another syndrome. I have no fingerd and have one toe on each foot that curled and I had that curled toe amputated when I was like 3. I feel a lot better knowing you all have it too. Background: EEM syndrome is the rare association of ectodermal dysplasia, ectrodactyly, and macular dystrophy (OMIM 225280). what causes ectrodactyly? It was great and I met people who gave my self-esteem a major boost. If it was a fluke, they said she would not pass it on to her children. What is the Cause of Ectrodactyly or Cleft Hand? I am 41 years old and come from a huge family that has ectrodactyly. I don't know were you live but we are in California if you would like the doctor's name I would be happy to pass it on. We're are ages 6 months to 60 years and everything in between. They need to find out their talents, as my mum and dad did with me. At what age does this begin? He has it on both feet and had reconstructive surgery when he was six years old (at his request). But he ran track in high school,and also had one of the fastest typing speeds. Everybody has flaws of some kind, physical, mental, emotional etc. I would like to say she had a good school life, but unfortunately, she was picked on and called a few names by some horrible, narrow-minded children. Then she left me in an empty room with a soccer ball and she hid from me, because she wanted to see what was going to happen. Love to you all. It's been tough growing up with the ridicule when I was a child. Coarse texture of scalp hair. Ectrodactyly: A variety of congenital malformations affecting one or both hands and sometimes even the feet. It's okay, though. Then if anybody wants a direct conversation they could but only if they wished. Giving one "special" rules and conditions of behavior that are less than expected (for the ability of that child) is not healthy. Ectrodactyly or Cleft Hand has been proved to be a genetic disorder which is autosomal dominant type. I was born in 1952 missing 9 digits in total. Imagine if you had ectro and were blind and couldn't hear. Bye! Was bullied, had five surgeries, and believe it or not, no one notices! Ectrodactyly alone is unlikely to affect health, it may be present alone, or may be part of a number of birth defects. Funny thing is, the umbilical cord wrapped around my toe and now its shaped into a ball. Ectrodactyly, also referred to as Split Hand/Split Foot Malformations (SHFM) can be inherited in an autosomal dominant (50%), autosomal recessive (25% if both parents are gene carriers), sex (X) linked manner or can be part of several syndromes including some chromosomal abnormalities. Ectrodactyly is a split hand or split foot malformation, with “complete or partial absence of some fingers or toes, often combined with clefts in the hands or feet,” according to National Organisation for Rare Diseases (NORD), an American health agency. I have two brothers and two sisters, and none of them has this birth defect. In my experience, friends quickly forget about it and strangers don't care. After 4 surgeries when he was very young, he has 3 normal fingers on each hand and short thumbs. Ectrodactyly is an uncommon inborn malformation of the hand where the intermediate digit is missing, and the hand is cleft where the metacarpal of the finger should be. The hands and feet of people with ectrodactyly (ectrodactyls) are often described as "claw-like" and may include only the thumb and one finger (usually either the little finger, ring finger, or a syndactyly of the two) with similar abnormalities of the feet. Now I am right handed, I am proud to say, and my handwriting is beautiful. Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (EEC) is a Rare Genetic Condition Characterized by. She has left school and gone to college where she is really happy now and nobody says anything to her and treats her like normal. Ectodermal dysplasia is a large group (180+) of inherited disorders characterized by a primary defect in hair, teeth, nails or sweat gland function, in addition to another abnormality in a tissue of ectodermal origin, e.g. I've been back on it for years though, since I was eight or nine, and the doctor still hasn't operated. A large number of human gene defects can cause ectrodactyly. Every question you can possibly think of is/has been answered. We're almost all members of all the groups so everyone can connect, our group is very active because it's private. Ectrodactyly (cleft) of the left hand, with three digits (1st, 2nd, and 5th digits). On her left hand two fingers were fused together, but she had an operation to separate them. Thus, Blockade of the aforementioned molecular and cellular process between the 6th and 7th gestational week would cause and ectrodactyly. I would take this condition over many others any day. SHFM may be inherited in an autosomal dominant, autosomal recessive, or X-linked manner. Blonde hair. Stacey. I have two sons, and one also has ectrodactyly, but with two fingers and two toes. -forgot to include that though I was told that I should have poor working sweat glands, they are for the most part normal. He is adopted, but nobody in his birth family has it, including his parents. Please look us up Facebook for my name or the Ectrodactyly Split-Hand/Foot group. Oh, well. Isn't it normal to have one?” Plus, my kids get five hand fulls rather than one big hand full of candy trick or treating. I type fast. It does have several types, and all of them are genetic. There are generally two types: Typical cleft hand: V-shaped and usually missing or partially missing middle fingers. He finally had enough and asked me to find him a foot surgeon. This is a case of familial ectrodactyly most likely with autosomal pattern of inheritance. Ectrodactyly is an inherited circumstance and if you have a family history of ectrodactyly and you are planning to have children, genetic counseling is recommended. Ectrodactyly is a birth defect that causes malformation of the hands and/or feet. In a cleft hand, there are always clefts in the central (middle fingers) part of the hand, and they’re usually V-shaped. I took great pleasure in reading the other posts, because I haven't ever known anyone with the same problems I do. I have hundred of trophies and 28 major sports winning medals at home. 0. He's not the best but he's not the worst either. Symptoms can vary greatly from one person to another. They are bad people, and you have to promise us that from today onward, if you feel something is difficult to do yourself, just ignore them and try to do as much as you can, OK?'' Sorry I wasn't clear enough about the two thumbs on my left hand. Now I've moved to London, and finished my masters in sports and exercise science. Check the full list of possible causes and conditions now! [6] Ectrodactyly is an inherited circumstance and if you have a family history of ectrodactyly, genetic counseling is recommended. When I got home, I told my mum that I didn't want to go to school, and I didn't want to study. Only if you actually have it, can you pass it on. If anyone has an answer please tell me. Ectrodactyly affects .028 percent of the population; it occurs at twice the birthrate of twins. I can identify with Martin as I was also born in 1952, youngest of two normal parents with two normal siblings. A rare genetic disorder often inherited in an autosomal manner characterized by limb malformations including syndactyly, median clefts of the hands and/or feet, and partial or complete absence of fingers or toes. Early physical and occupational therapy can help individuals adapt, and learn to write, pick things up, and be fully functional. He walked at 10 months, and has never looked back. My daughter has EEC. I was so frustrated when he was born and worried about that he would be hurt by strange people, or even rude staring. As worried as we were when he was born, we have never had to worry about getting him special help for anything. I am soon to graduate high school, and have no idea what I shall major in in college. Several months ago, he told me suddenly: "Mum, sometimes I feel my right hand is not convenient." She is missing her middle finger. I have both syndactyly and electrodactyly. It is uniquely caused by autosomal recessive mutations in the DLX5 and Wnt genes, and has been only seen in three reported families. The doctors say there's a 50/50 chance it's chromosome no. This little known plugin reveals the answer. Those who have it or have children with the condition are at increased risk for passing it onto future children. Ectrodactyly Symptoms and Signs This medical condition appears during birth and symptoms would naturally include the malformations of the hand and/ or feet of the infant. Dr. Gustavo Carbone answered. Learn about a little known plugin that tells you if you're getting the best price on Amazon. If you're ever in Dublin Ireland I would be happy to meet you if that's any help. Now he can use spoons, all kinds of pens and do most of things by himself. A different website states that ectrodactyly translates to "monstrous fingers". I'm looking for a job. When I was 3, my grandmother put me in therapeutic horseback riding and it was the best thing she ever did for me. 1 doctor answer. One doctor suggested he have surgery him to close his cleft when he is 10 months old, before he starts walking. From then on I started hiding my hands, and my parents hated that I did that. i can do everything. I have some great people in my life that I love dearly, but I'll never just feel comfortably blended in. Is anyone else like this? You said "It is not recessive." I am better with my hands than most people. I know the pain I've been through in my life, so, I don't want to pass it to my next generation, so I made a decision not to have a baby. Could anyone please tell me whether you/your child/your relatives or friends with this anomaly have undergone surgery for closing the cleft? It runs in my family as well and to me and my two kids and their grandmother and their great-grandmother, cousins, aunts and so on, but it started with my great grandmother who was normal, and grandfather, who was normal, but my grandfather worked in the coal mines and lots of birth defects happened during those eras. I must say I have cleft palate in my family and she is being tested for ectrodactyly ectodermal dysplasia/clefting. Don't! Why should I explain all this stuff? It is not recessive. I am 19 weeks pregnant and was told that my baby girl will be born with ectrodactyly (based on the ultrasound). My mum said when I was about three or four years of age, I started to write using my left hand because I was unable to hold the pen with my right hand. Otherwise not a big deal. Arachnodactyly ("spider fingers") is a condition in which the fingers and toes are abnormally long and slender, in comparison to the palm of the hand and arch of the foot.Also, the individual's thumbs tend to be pulled inwards towards the palm. That means a child’s born with it, as opposed to developing it later on. Not that easy I suppose, is it? From your description your hands and feet seem to be very, very similar to mine. Take care and love to you all. The two fingers or toes to the right and left of the missing finger are fused together. This disease does not My coach was shocked, and he said as a striker I was doing well, and asked me why I wanted to be the goal keeper? Growing up was hard in elementary and middle school. I promised them, then I went out for that school team again, and this time I told the coach I wanted to become the goal keeper. 1 Ectrodactyly or Cleft Hand can be present in one or in both hands. Does anyone know? Just kidding. Funny how even the word "normal" can sound slightly inappropriate when talking about any disability. If you're ever in Ireland we could meet up if you like. There's probably more information in our groups than anywhere else! He also feels disturbed sometimes. This schism gives the hands the show of lobster claws. This is a really hard thing to have because of the ignorant people in this world. It does have several types, and all of them are genetic. This is an amazing forum. 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 similar problems (though one of my aunts has CF, a mutation that also takes place on the same chromosome). We do not have it in the family at all, and we have been tested so we were told it was a mutation. He plays baseball, football and soccer and holds his own. He accepted my suggestion calmly. What is Ectrodactyly? He is worried about passing on his condition to children he might have, so i was wondering what the chances were of passing it on. 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.