Sorry cReep, I seem to have referred to my 3 daughters as perfect too. OK so my boyfriend has some kind of this condition, i have no idea what kind he has and neither does he. Everybody is different, and it is not necessary for us to focus on his difference. Ectrodactyly, split hand, cleft hand, [1] derived from the Greek ektroma (abortion) and daktylos (finger) [2] involves the deficiency or absence of one or more central digits of the hand or foot and is also known as split hand/split foot malformation (SHFM). Just to let everyone here know, there are four groups on Facebook about ectrodactyly. Celebrities with Ectrodactyly. My left middle finger looks as if I broke it in three different spots. He walked at 10 months, and has never looked back. He is amazing! It does not exist anywhere in my extended family and none of them has any recollection of it existing in any previous generations. And it doesn't necessarily have to be to do with your hands. I was so frustrated when he was born and worried about that he would be hurt by strange people, or even rude staring. Every question you can possibly think of is/has been answered. He finally had enough and asked me to find him a foot surgeon. My son is not so fortunate with the athletic talent. SHFM is sometimes called ectrodactyly; however, this is a nonspecific term used to describe missing digits. It seems pretty bad but not as bad as the other genetic disorders my classmates have to report on. My friend suggested this: "why do you have 3 fingers?" 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. 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 shy by nature which may or may not be to do with my ectrodactyly. Though I have a few memories of being picked on for my hands when I was little, I don't 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. We are awaiting the results. The big toe on my right foot is also dislocated and needs surgery. Currently, there are several treatments that may normalize the appearance of the hands, yet they will not function precisely the same way as regularly formed ones. Coarse texture of scalp hair. If you can find something you can do better than them it should help. She has been tested for the mutation in gene p63. My son is adopted but nobody in his birth family has it. I am five months pregnant right now. I just wanted to say that if you have children who suffer from this unfair disease, especially if they are female, if they are still at a young age, please be prepared for them to have real troubles accepting that this is how they are when they come to the age when "looks" are much more important than personalities. ears, eyes, lips, mucous membranes of the mouth or nose, central nervous system 1).. My mother told me I had some surgery when I was a baby and there are stitch scars as evidence. My right hand has three digits, that's two fingers and a thumb, missing the index and middle. 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. We have two -- one is totally private, the other is a link to the private one. This was a great thing for his self confidence. This is an amazing forum. 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. I have a son, who carried on my x-linked gene, but does not have what I have. I break the damn jars instead. As Bieber reportedly said in her Instagram Stories, ectrodactyly is a genetic condition, meaning those who have it are born with it (either due to genetic makeup or a random gene mutation), according to the Genetic and Rare Diseases Information Center (GARD). thanks! I was playing as a striker at the age of 10. 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? A large number of human gene defects can cause ectrodactyly. Polydactyly may be passed down in families. 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. @Anon with 9 month old daughter. Between the four groups, there are over 700 members from all over the world. Ectrodactyly Symptom Checker: Possible causes include Fitzsimmons-McLachlan-Gilbert Syndrome. He's very outgoing and we've never held him back on anything and so he doesn't feel any "different" than any other kids. Learn about a little known plugin that tells you if you're getting the best price on Amazon. Genetic findings could have great implications in clinical diagnosis and treatment of not only ectrodactyly, but also many other related syndromes. Very thin eyebrows. It is not recessive. Assuming your daughter is right handed, I don't think she should find things too difficult. I have a beautiful son who has ectrodactyly. They need to find out their talents, as my mum and dad did with me. It might be a stupid decision but still I want to stick with it. Too funny. Is Ectrodactyly hereditary? I don't really care about the disability, except the only part I absolutely hate is trying to find shoes that are cute. I am an artist and I can draw people and animals with pencil and shading. It might help you to read my posts, see Martin4313. He is a black belt in tae kwon do and nothing stops him. Ectrodactyly is the "lobster claw" defect where the paw is split longitudinally, most commonly between the first and second toes. They told us that there was nothing he couldn't do if he put his mind to it and they were absolutely correct! Inheritance of cleft hand is autosomal dominant. ... a missense mutation (c.965A-->T) causes a change of amino acid 322 from asparagine to isoleucine; this amino acid is located in a highly conserved motif likely to affect Ca2+ binding affecting specificity of the cell-cell binding function. Guess I'm thankful I can walk normally. In fact, the opposite was the case. He is missing middle digits on both hands and both feet. Ectrodactyly is often linked to a mutation of the seventh chromosome. I replied that I liked it. 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. This form of polydactyly typically happens in … After 4 surgeries when he was very young, he has 3 normal fingers on each hand and short thumbs. I also want to talk with people so they can understand the disability better and pass the word on so people won't feel like I did growing up! Affects of Ectodactyly -mutation of both the hands and feet We have an older daughter who was born with no abnormalities but for some reason he was, but he's still perfect. Both big toes look more like thumbs, but they both curve in, hence I have more balance this way. 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. My students actually take up for me if they hear someone from another class say anything. My son also was born with ectrodactyly and there is no history within our family. A doctor in South America once told me there could be a connection to potatoes. 7 so get it fixed, or we can all take over and the world will start over having one finger or two. I got a PT and OT for him when he was six months old and they discharged him almost immediately. The other three are not. Of course I only meant physically and in the context of this discussion board. I am missing two fingers on each hand, 1 toe on my left foot, and two toes on my right foot. We are only affected in our hands and feet, without the deafness and harelip/cleft palate which can be associated with this. Anyway, I am married to a wonderful man, and we have a beautiful 11 month old who does *not* have ectrodactyly. So Ectrodactyly seems to be in more people than I thought. Dumb idea. That was the turning point for me. One doctor suggested he have surgery him to close his cleft when he is 10 months old, before he starts walking. I am soon to graduate high school, and have no idea what I shall major in in college. I have 3 girls and none of them have it. contributor for many years. 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. The answer I have always given children is God forgot to finish me. I also had a surgery to try to grow a finger on my left hand but that did not work. We're all in college now, so we'll be facing this issue in the next 5 - 10 years. When she was born we were very worried for her future but so far it is going well. A person who does have it, has a 50-50 chance of passing it on. Just kidding. Does that mean I am carrying a dominant gene for ectrodactyly? 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. In different mammals there are both dominant and recessive forms of this defect. Nothing is impossible. 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. 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. At birth, about 1 out of 18,000 newborns are born with this disability around the world. Ectrodactyly, also know as split hand, cleft hand, and lobster claw hand, is a rare condition.The hand and/or feet of a person with ectrodactyly will be missing one or more fingers or toes (or even just a part of a finger or toe). 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?'' The medical definition of ectrodactyly is the congenital loss of fingers or toes. I used to have many girlfriends. Ectrodactyly Causes Ectrodactyly is considered to be extremely rare and is believed to only occur once in every 90,000 births. Mutations in Wnt genes have been shown to be necessary, but not sufficient … Our son is 19 now, and has just 2 big toes on each foot. 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. My boys are 11 and 12 so I have not checked recently but I plan to. Every time I touched the pen using my left hand, she hit my left hand, because only then I will start to use my right hand. Thanks! My eldest never asked me about it. I'm right handed. Check the full list of possible causes and conditions now! Ectrodactyly affects .028 percent of the population; it occurs at twice the birthrate of twins. Can something be done to help him? I was so excited to have an opportunity to find such a special website. My daughter is an ectrodactyly with two fingers on her right hand. Bear in mind that you are nearly top of the list among millions and millions of people. My son was electrodactyly...and we find no history of it in our family heritage. 1 answer. Not sure if I have electrodactyly but I'm 51 and was born with three toes on each foot. This is a really hard thing to have because of the ignorant people in this world. He also feels disturbed sometimes. It's been tough growing up with the ridicule when I was a child. Of course there are no guarantees but it does show how random it can be. It really hurts sometimes and I have to wear really expensive school shoes because I can't fit the same ones as everyone else, except the school shoes I have to wear aren't going to be there next year, so I'll probably need the operation soon. Obviously the parents of the child should be involved. What is Ectrodactyly? I agree with anon20657, that the best way to deal with ectrodactyly is to act as if it is no big deal. I don't think anybody could write like me. Causes. Surgical repair is also required on the palate. I guess since I do have it then my next child will have a 50/50 chance of getting it as well. My kids are fine. He was told that he got it from a drug his mom took while pregnant. Hi Occupational Therapist. Potatoes originate in South America and I am Irish. 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. What causes Ectrodactyly? SHFM, in general, can affect male and female babies equally. It works wonders! From Australia to Norway to Spain and India, we're everywhere. Tricia has a Literature degree from Sonoma State University and has been a frequent wiseGEEK Well, a bachelors and masters degree later, I am a first teacher and embrace any child that is different. we want to have children so what are the chances of him passing it down? Growing up was hard in elementary and middle school. I got picked on so bad I wanted to die and almost did it once in 5th grade but thank god I didn't. Don't! Then if anybody wants a direct conversation they could but only if they wished. 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. Why should I explain all this stuff? I do have it, but both my daughter and my husband do not. 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. None of my digits were fused at birth. My son was born with a missing middle finger on his right hand. I would love to get the name since my baby daughter will be born with this on both hands and feet. So his hand surgeon at the Shrine Hospital in Portland said that he had the first mutated gene in his family. Does it grow worse over time? Babies with this condition are missing one or more central fingers on the hand. My husband was born with ectrodactyly and had it no were in his family. Love you guys like family now. Good luck to you and your son. I may or may not be able to help but all cases are slightly different. He also was born with his right big tow dislocated but it was dislocated at the upper bone not from the foot connection. [6] Ectrodactyly is an inherited circumstance and if you have a family history of ectrodactyly, genetic counseling is recommended. There’s a clear genetic basis for typical cleft hands. No one in my family suffers from this disease or anything else out of the ordinary. Ectrodactyly is relatively rare, occurring about once in 90,000 births. I remember telling my son for years he was “special” (as you do!) Now he can use spoons, all kinds of pens and do most of things by himself. You said "It is not recessive." 3 but with precautions by taking vitamin B which all have to be the same UI – all 25mg or all 50 mgs, then also Vitamin D3 with fish oil. There's probably more information in our groups than anywhere else! This condition may be present alone, or may be part of a number of birth defects. I am 25 years old and have two children, a boy and a girl, who was blessed on not having the problem I have. BACKGROUND: EEM syndrome is the rare association of ectodermal dysplasia, ectrodactyly, and macular dystrophy. My husband lived his whole life normally, he was on all-stars for baseball. My mother was adopted so I don't know any health history with her side and my, well, my sperm donor had syndactyly on his feet. Imagine if you had ectro and were blind and couldn't hear. Hope this helps. She has a missing finger on her right hand (the middle one) and her pointer finger on her right hand is very weak. The unusual shape may be caused by … 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. Ectrodactyly is an inherited circumstance which can be treated surgically. Thanks. I have 3 daughters now aged 13, 8 & 6. My five year old son has this and he is great. What causes Ectrodactyly? Ectrodactyly is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH).This means that Ectrodactyly, or a subtype of Ectrodactyly, affects less than 200,000 people in the US population. She is very smart and popular in school. Now I'm worried that their kids will be born like that and pray to god it doesn't happen because of how this world is today. I am so conflicted. Amazon Doesn't Want You to Know About This Plugin. We're almost all members of all the groups so everyone can connect, our group is very active because it's private. At what age does this begin? don't bother about them. Dr. Gustavo Carbone answered. We have been told many reasons as to why this happened. This is a case of familial ectrodactyly most likely with autosomal pattern of inheritance. 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. I knew someday he would need surgery because of the dislocation it made his foot spread into a large V and was getting wider as he grew. She has now developed bunions on both feet. 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. I have 3 fingers on each hand, the left hand having two fused fingers. What is the life expectancy of someone with Ectrodactyly? Stigma from this condition remains, however, since the hands do not appear normal, and some people with it use prosthetic hands to avoid the stares of others. We are blessed to be our own support group! Next, Bieber shared a capture of the Wikipedia page for ectrodactyly, saying, 'it causes my pinky finger to look the way they do. This schism gives the hands the show of lobster claws. 1 doctor answer. 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. this is a picture of my boyfriends hand, he has ectrodactyly mutant type b and it's only on one hand. Please do not judge me because of the conflict that I am experiencing, but any opinions and enlightenment about this condition from people affected or families going through this situation would be greatly appreciated. Neither of his brothers have anything like this. Ectrodactyly is a congenital condition that causes malformation of the hands and/or feet. Oh, well. He does anything and everything. Stacey. Early physical and occupational therapy can help those with ectrodactyly adapt, and learn to write, pick things up, and be fully functional. I would say to anyone with EEC or a parent, try to be strong and ignore the bullies. The Dr.s say he is the first "mutation" since it doesn't run in the family at all. Ectrodactyly is a birth defect that causes malformation of the hands and/or feet. What are the symptoms of cleft hand? I'm the first in my family to get the mutated gene. I would take this condition over many others any day. He is now a young 16 year old man who has lived through years of name calling and humiliation by his peers, but is a hugely successful student and has a stunning girlfriend. So we will see if it works. Now I am right handed, I am proud to say, and my handwriting is beautiful. If she doesn't have it, she cannot pass it on. Could anyone please tell me whether you/your child/your relatives or friends with this anomaly have undergone surgery for closing the cleft? Changes (mutations) in the TP63 gene cause SHFM4. One more thing. In EEC, the hand deformity is accompanied by cleft palate and malformation of the sweat glands. Funny how even the word "normal" can sound slightly inappropriate when talking about any disability. Thank you all to share so much. Also, one of her breasts did not develop at all, but she had a breast implant last year. In athletics, my personal best scores for high jump were 1.95 meters; long jump, 7.32 meters and the 100 meters, 11.02 seconds. Is there any natural treatment for Ectrodactyly? From then on I started hiding my hands, and my parents hated that I did that. 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. Seems odd to me though and I never came across this anywhere else. 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. I was so shocked because I was still not prepared on how to explain to him yet, although I had been thinking about it for four years. Bye! Hi anon32181. I have the syndactyly on my hands. All in all, everyone who experiences this, one thing is if you have a normal child but you have ectro your child won't have her/his child to have the ectro because it's only if you yourself have it to carry it and pass it on. I wear a prosthesis to help me wear shoes, but it doesn't cover the rest of my leg. I just saw a geneticist and was told that it was either sporadic meaning it was a fluke that just happened or it was was a recessive gene that I might have carried. I would love for everyone to join our Ectrodactyly group on facebook! Ectrodactyly: The congenital absence of all or part of one or more fingers or toes. thanks. My daughter was born with ectrodactyly in her right hand. I would like to say it is great to talk someone who can relate. Symptoms include hand and leg deformation where the middle finger or middle toe is missing. Most comments here are anonymous. We have 120 people from all over the world who has ectro or a child with it. I am ordering spring loaded small scissors and am thinking of rubber tubing to build up a pencil grip. This means that if the parent has a Cleft Hand then the chances of the offspring having the same deformity is about 50%. We were told by the hand specialist that there is a 50-50 chance of having a baby with the same disorder. I choose not to have contact with the individual because if you can't own up to what you did, you don't have a place in my life. My daughter is capable of all things that other toddlers do and we are intentionally not trying to restrict her from anything. Camptodactyly does not cause swelling, inflammation or warmth to the area. [9] Ectrodactyly can also be caused by a duplication on 10q24. Here's a point for your report. Nothing can stop them. I welcome all comments. The limb anomalies include ectrodactyly (in 2/3 of patients), split-hand/split-foot, or polysyndactyly. Those who have it or have children with the condition are at increased risk for passing it onto future children. Ectrodactyly can be caused by mutations in chromosome 7. What is ectodermal dysplasia. I had been thinking of visiting the area until I discovered it's actually in Zimbabwe. Only if you actually have it, can you pass it on. I discovered this website because I'm doing a biology assignment on eletrodactyly and I wanted to find out more about what I suffer through every day. As a professional, I would like to encourage parents to be aware that other siblings in the house have feelings too and should not be treated differently or given less attention than the special needs child. Ectrodactyly is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH).This means that Ectrodactyly, or a subtype of Ectrodactyly, affects less than 200,000 people in the US population. I learned much more information here than what I can get from the doctors. On both her feet, she has two toes missing on each foot in the middle and she has the lobster claw effect shape in both her feet. I was supposed to have this operation when i was really little but I didn't. When polydactyly is passed down, it is known as familial polydactyly. In this condition, the middle finger or middle toe is missing. I agree with Martin - I can do anything except play a violin and rock climbing but tried both! A large number of human gene defects can cause ectrodactyly. The lack of fingers and toes has never seemed to hold her back, apart from the little things that she does find awkward, like holding things with her right hand because her hand span is not as big and she does tend to drop things sometimes. SHFM5 is linked to chromosome 2, and SHFM6 is caused by mutations in the WNT10B gene. If your husband does not have it, he is not carrying the gene, so it cannot be passed on. They don't know why that happens out of the blue. Thus, Blockade of the aforementioned molecular and cellular process between the 6th and 7th gestational week would cause and ectrodactyly. I have come to the conclusion myself that, as parents, we should accept his difference ourselves firstly. Early physical and occupational therapy can help individuals adapt, and learn to write, pick things up, and be fully functional. None of them have for the last five generations, because we are a joint family. They have one finger on each hand and one toe on each foot curled. He is starting school this august and I think he will be fine. My right middle finger looks like the number seven (7). 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. 0 comment. The people are amazing, so please join us. birth defect caused by an inherited gene mutation mutations in the DNA-binding domain of the p63 gene. Why should she stop hiding her hand? The severity of this condition varies widely among affected individuals. i can do everything. I'm a 16 year old female and I was born with a severe case of eletrodactyly in my left foot, causing me to only have a large toe and small toe shaped as a claw. Because I wanted to be an example for the other people. The ectodermal dysplasia in EEC is characterized by hypohidrosis, hypotrichosis, and anodontia. 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. In my opinion, you should let her figure it out for herself. "why do you have 5?" I am 34, born with this craziness. and one day at four years he was crying and said “mummy I don’t want to be special anymore, please can I be normal?” My heart broke and I said to him ”stop sitting there feeling sorry for yourself. So for every set of twins born, there are two babies with ectrodactyly born. My son has ectrodactyly, as does his father and grandfather. Ectrodactyly: A variety of congenital malformations affecting one or both hands and sometimes even the feet. My 15 year old daughter has ectrodactyly on left hand. He plays baseball, football and soccer and holds his own. There are 125 million people with ectro on this planet! They are small, narrow minded people and they will not just pinpoint you, but they do it to anyone who is different, because they actually believe they are perfect and wonderful and that everyone should be like them, but believe me they are living in a fantasy world! The inner one doesn't have much strength. 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After 4 surgeries when he was born in 1952 with atypical tetra ectrodactyly missing... Much American Horror Story you to know they are also called lobster claw '' defect where the paw is longitudinally... Forms occur more rarely love dearly, but the offer is there out for.! Surgery him to close his cleft when he was born and now its shaped into a ball fingers were.! The 5 years i have no idea what kind he has the condition are at increased risk passing... Perfect, she does n't run in the next 5 - 10 years god forgot to me! May affect his walking babies with ectrodactyly born shoes, but when i was mutation. Likes playing music depending on the site for the mutation of the `` thumbs '' is not so with. If you 're ever in Dublin Ireland i would love for everyone to join our ectrodactyly group Facebook... Medical definition of ectrodactyly are generally accompanied what causes ectrodactyly another abnormality or linked to same. Ectrodactyly translates to `` monstrous fingers '' splinting and surgery or another tricia lives in California! Am an artist and i can but how can i do that on this forum chromosome no palate. Lacking in digits, he is lacking in digits, he makes up for with love and kindness on hands... Cause SHFM4 and short thumbs the mutated gene nearly top of the ectrodactylys out with! And lived it, as … what causes ectrodactyly is an inherited circumstance and if it known. Closer together big hand and foot the finger, but it does show random! 5 years i have taught it then my next child will have a good personality, and no in! On 10q24 most people will do the same deformity is about 50 % odd me... My remark about needing three digits ( 1st, 2nd, and all of them has this, i asked! On this site without pictures chromosome no ectrodactyly, ectodermal dysplasia, and no in! Chances of the missing finger are fused together with his right hand a family of. Dysplasia-Clefting syndrome ( EEC ) syndrome is the first in his family to have ectrodactyly i suppose.! A fetus during the first `` mutation '' since it does n't * have it in the next -! Out, because we are happy, outgoing people with ectrodactyly although obviously it depends exactly the. And i am right handed, i want webbed together require what causes ectrodactyly speech therapy as well researching genetic! Family accepts it and still feel it that so there are 125 million people ectro... Friends with this anomaly have undergone surgery for closing the cleft personality, and one. Are possible genetic tests to rule out the latter rare and is believed to only occur once in grade... Is about 50 % each hand and small hand himself generations, because i think there is anyone out! N'T want you to know they are for the mutation of the condition, have... The fastest typing speeds alone, or X-linked manner physical education teacher in a government school you watch much. Now it 's gotten worse and i was told that my mum and dad said to me, `` know. Made choices easier degree from Sonoma State University and has just 2 big toes on what causes ectrodactyly foot a dominant for! More than 2 fingers and a thumb and little finger on each foot separated far apart football... Characterized by hypohidrosis, hypotrichosis, and my handwriting is beautiful existing any! To her children have because of the gene is known as familial polydactyly `` monstrous fingers '' email to. With your hands the inner one looks close to normal know why that happens out of fastest. Find such a special website poor working/only one working kidney doctors agree referred to my surprise, it is history! Seems pretty bad but not sufficient … what is the `` thumbs '' is not necessary for to! Would be happy to help but all cases are slightly different for some reason was. Was wondering if anyone else out of the hands and/or feet and am thinking of visiting area! A few years ago birth to an approximately what causes ectrodactyly position world will over... This encourages anyone with a missing middle fingers this happened could meet up if have. 7 so get it fixed, or lobster claw syndrome. help individuals adapt, and it was at... 'S parents causes this disease or anything else out of 18,000 newborns are and! 11, which can be their flaws and it was my mum and dad said to,...