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What Is Ectrodactyly?

Ectrodactyly occurs when there is a malformation that occurs in the hands and/or feet.
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Ectrodactyly is a birth defect that causes malformation of the hands and/or feet. In many cases, the middle finger or middle toe is missing, and the two fingers or toes to the right and left of the missing finger are fused together, although there may be other deformities. This has led to the condition being called "lobster claw syndrome," but many people who have this condition find the term extremely disrespectful.

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. Early physical and occupational therapy can help individuals adapt, and learn to write, pick things up, and be fully functional. 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.

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

The most common type 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.

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

In EEC, the hand deformity is accompanied by cleft palate and malformation of the sweat glands. Medical interventions are required to help preserve the skin that suffers from the lack of sweat glands and becomes brittle. Surgical repair is also required on the palate. Those undergoing repair often require lengthy speech therapy as well as physical therapy.

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Discuss this Article

anon353054
Post 69

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. I absolutely hate the name "lobster claw syndrome." I find it the most offensive thing to call someone who has no idea what I go through every day.

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.

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.

I wear a prosthesis to help me wear shoes, but it doesn't cover the rest of my leg. No one in my family suffers from this disease or anything else out of the ordinary. It is just an accident.

I hope that if anyone else out there is the one suffering from this, I want them to know they are not alone.

anon352725
Post 68

My son was born with a missing middle finger on his right hand. We have been told many reasons as to why this happened. Well he has the finger, but it's inside his hand and has fused together with his index finger. He is now almost 13 and plays football and baseball and is so full of life.

But now I'm a little worried cause the doctor wants to go in and remove the finger and bring the gap closer together. I wish I knew why this happened. I have been given so many reasons and none of the doctors agree. Is anyone else like this? Everything I see is different from him in some way or another.

anon340476
Post 67

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. Can something be done to help him?

anon317670
Post 65

Just to let everyone here know, there are four groups on Facebook about ectrodactyly. Between the four groups, there are over 700 members from all over the world. There's probably more information in our groups than anywhere else! The people are amazing, so please join us. The name of our group is 'Ectrodactyly - Private Group' and it won't show up in any searches; it's totally private.

The other three are not. We're almost all members of all the groups so everyone can connect, our group is very active because it's private. From Australia to Norway to Spain and India, we're everywhere.

trust31
Post 64

My son is now four months old and he was born with ectrodactyly-cleft foot (his feet have only a big toe and a little toe with a cleft in between). There is no family history of ectrodactyly.

One doctor suggested he have surgery him to close his cleft when he is 10 months old, before he starts walking. Another doctor told us not to do any surgery until he is 10 years old, as doing surgery may affect his walking.

Could anyone please tell me whether you/your child/your relatives or friends with this anomaly have undergone surgery for closing the cleft? If so, at what age did they have surgery and have they faced any other complications after treatment like problems with walking?

anon313310
Post 63

I am 19 weeks pregnant and was told that my baby girl will be born with ectrodactyly (based on the ultrasound). We were given the option to continue on with the pregnancy or to terminate. I am so conflicted. The doctors said that there could be other symptoms associated with it that we should prepare for, like kidney problems, hair and sweat glands issues, hearing loss and mental delay.

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.

Thank you and blessings to all of you.

anon301429
Post 62

I hope I am the right person to talk about his ectrodactyly experiences.

I am Antony, and I was born with ectrodactyly at 1978 in an Asian country. On my right hand, the middle three fingers are joined together, my thumb is completely perfect, my little finger a bit smaller than usual. That means all my fingers are smaller than usual (around two inches) except my thumb, and on my left hand, the ring finger and the middle one are shorter than usual (by an inch). On my left foot, all five toes are smaller than usual, and my right foot is OK.

My Mum and Dad always cared about me from my childhood. I have two brothers and two sisters, and none of them has this birth defect. None of them have for the last five generations, because we are a joint family.

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. 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. It was my mum's idea, and yes, it did work for me. Now I am right handed, I am proud to say, and my handwriting is beautiful. I don't think anybody could write like me.

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. One day she noticed I kicked the ball using both legs, then when I was school age, I joined our school soccer team. I was playing as a striker at the age of 10. My teammates always teased me about my fingers, and it was only then I realized I had something different from other people. When I got home, I told my mum that I didn't want to go to school, and I didn't want to study. I still remember that my mum and dad said to me, ''You know son, you are something special. That's why they are jealous of you. don't bother about them. 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?'' 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. 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? I replied that I liked it.

After five or six years (when I was 18), I played for a professional football club, and then after three years I played for my national team as well.

Apart from football, I was good at studies and athletics too. I have hundred of trophies and 28 major sports winning medals at home. I became a physical education teacher in a government school. Now I've moved to London, and finished my masters in sports and exercise science. I'm looking for a job.

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.

I used to have many girlfriends. I have a good personality, and 5'11 in height. My last girlfriend and I decided to get in to marriage life, and before marriage, I did some research and I found I could have a baby with the same issues. 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. The marriage was canceled and we separated. It might be a stupid decision but still I want to stick with it.

Why should I explain all this stuff? Because I wanted to be an example for the other people. Parents who have children with ectrodactyly need to support their children. They need to find out their talents, as my mum and dad did with me. Nothing is impossible. Nothing can stop them. Bear in mind that you are nearly top of the list among millions and millions of people.

I wanted to do more research. Can somebody help me please? I welcome all comments.

anon264980
Post 61

@cclack, Post 38: I read your post about a doctor in California who performed surgery on your child. I would love to get the name since my baby daughter will be born with this on both hands and feet. I am five months pregnant right now. I am not sure if you are allowed to post the name on here or not, but hopefully you can point me in the right direction. Thanks!

CathiFrattin
Post 60

My son has ectrodactyly, as does his father and grandfather. He's awesome!

I would love for everyone to join our Ectrodactyly group on facebook! We have two -- one is totally private, the other is a link to the private one. We have 120 people from all over the world who has ectro or a child with it. It's a great group and I'd love for you all to join it! Every question you can possibly think of is/has been answered.

We're are ages 6 months to 60 years and everything in between. Ectrodactyly affects .028 percent of the population; it occurs at twice the birthrate of twins. So for every set of twins born, there are two babies with ectrodactyly born. There are 125 million people with ectro on this planet! Please look us up Facebook for my name or the Ectrodactyly Split-Hand/Foot group. We'd love to have you join us!

anon229948
Post 58

I have both syndactyly and electrodactyly. I have the syndactyly on my hands. I have all five fingers, but when I had surgery as a baby both of my middle fingers were deformed. My left middle finger looks as if I broke it in three different spots. I can touch my palm with the tip of my finger by moving it an inch.

My right middle finger looks like the number seven (7). My friends being the immature age of 20-27 say it's a * spot finder but I like to rephrase it as a clever nose picker. It works wonders!

On both of my feet I have three toes. I am missing both of my middle toes. Both big toes look more like thumbs, but they both curve in, hence I have more balance this way.

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. 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.

anon221871
Post 57

Not sure if I have electrodactyly but I'm 51 and was born with three toes on each foot. It's been tough growing up with the ridicule when I was a child. My hands are fine and no one else in my family has the condition. Guess I'm thankful I can walk normally.

anon219825
Post 56

So Ectrodactyly seems to be in more people than I thought. 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 used to hate it but in fact it's very helpful because people are concerned and in my life I'm famous for it. My kids are fine. They have one finger on each hand and one toe on each foot curled. I myself have one finger on each hand but two toes on each foot separated far apart from each other. Funny thing is, the umbilical cord wrapped around my toe and now its shaped into a ball. Too funny.

I don't really care about the disability, except the only part I absolutely hate is trying to find shoes that are cute. Gosh, the shape of my feet destroy the shape of my shoe tremendously. Oh, well. Life throws curves and I'd rather have this than be brain dead or no limbs or not able to see, so my kids say this to their friends: “Why do you have five fingers? 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.

Having ectrodactyly is kind of fun and all the jokes are hilarious. I'm going to start on having my baby no. 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. So we will see if it works. My mother had my brother and sis who are normal and she took these vitamins, then the doc said no, it's a 50 percent chance so she stopped taking them when she had me. Dumb idea. It's okay, though. I just want my child to have 10 toes so I can buy cute shoes and they will be made fun of less or not at all. Otherwise not a big deal.

Although playing wii with the nunchuck freaking stinks. Makes my blood boil. I get so competitive and I can't control all the buttons like I want.

I am an artist and I can draw people and animals with pencil and shading. I have great handwriting. I type fast. I flip people off with my one finger and they get the idea. I help my husband work on the car because he drops bolts into small areas. I break the damn jars instead. Just kidding.

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 feel a lot better knowing you all have it too. Love you guys like family now.

The doctors say there's a 50/50 chance it's chromosome no. 7 so get it fixed, or we can all take over and the world will start over having one finger or two. I honestly do think we're special because God knew we could handle this and everyone else has other problems they can handle that we couldn't. Imagine if you had ectro and were blind and couldn't hear. Then that would get bad. Take care and love to you all.

anon210603
Post 54

My daughter has EEC. We do not have it in the family at all, and we have been tested so we were told it was a mutation. We were told she has a 25 percent chance of passing it on. She has a missing finger on her right hand (the middle one) and her pointer finger on her right hand is very weak. On her left hand two fingers were fused together, but she had an operation to separate them.

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. She has now developed bunions on both feet. Also, one of her breasts did not develop at all, but she had a breast implant last year.

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. 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.

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.

I would say to anyone with EEC or a parent, try to be strong and ignore the bullies. 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!

anon208450
Post 53

My son was born with ectrodactyly, with only two fingers on his right hand. There is no history within my family or his father's. I was so frustrated when he was born and worried about that he would be hurt by strange people, or even rude staring. But to my surprise, it has bee not as hard as I thought during the past four years. He is happy and never feels shame about his hand. He has realized that his two hands are different and that they are different from other people. He calls them my big hand and small hand himself.

He also feels disturbed sometimes. Several months ago, he told me suddenly: "Mum, sometimes I feel my right hand is not convenient." 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. I just said: yes. When you feel inconvenient, just let me know, and let's think about how to deal with it together. He accepted my suggestion calmly.

Now he can use spoons, all kinds of pens and do most of things by himself. What makes me feel proud of him most is that he plays an electronic organ and he likes playing music.

I have come to the conclusion myself that, as parents, we should accept his difference ourselves firstly. Everybody is different, and it is not necessary for us to focus on his difference. If the family accepts it and gives him a relaxed space, he will accept and deal with it much easier, I think.

I was so excited to have an opportunity to find such a special website. I learned much more information here than what I can get from the doctors. Thank you all to share so much.

Martin4313
Post 51

@Anon with 9 month old daughter. Sorry I wasn't clear enough about the two thumbs on my left hand. I meant there are two digits where a thumb should be. The outer one is deformed and the inner one looks close to normal. The outer one does all the work. The inner one doesn't have much strength.

None of my digits were fused at birth. In fact, the opposite was the case. Between the thumb and fingers on all four were open further down than normal as well as between the two thumbs on the left hand. They were all stitched up soon after birth to an approximately normal position.

anon164236
Post 50

My son also was born with ectrodactyly and there is no history within our family. He has it on both feet and had reconstructive surgery when he was six years old (at his request). 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. He walked at 10 months, and has never looked back.

He is a black belt in tae kwon do and nothing stops him. 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. My one piece of advice to any parent out there hurting for their child’s “difference” is to treat their condition with indifference. I remember telling my son for years he was “special” (as you do!) 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. Be grateful you have got feet at all and can walk,” then I got up and walked away and locked myself in my room and cried for hours. But he did get up and he never looked back. It was the best thing I ever did and it was hard on my boy, but that’s what he needed: a family to support him and give him strength throughout his life long journey!

It is so wonderful to have the opportunity to write on such a special website. Love to you all.

anon163938
Post 49

Thank you Martin 4313, very interesting and reassuring. My daughter is capable of all things that other toddlers do and we are intentionally not trying to restrict her from anything. As this seems to be so rare its nice to speak to someone who knows about it. I was just wondering as you said two thumbs were fused together, why they hadn't been separated? Thanks for your reply.

Martin4313
Post 48

@anon163376: I think you should read posting number 11, which I wrote a few years ago. Of course there are no guarantees but it does show how random it can be.

My remark about needing three digits is only my opinion. My right hand has three digits, that's two fingers and a thumb, missing the index and middle. I'm right handed. My left hand has four digits but like two thumbs together and two fingers, again missing index and middle. One of the "thumbs" is not very useful.

My mother told me I had some surgery when I was a baby and there are stitch scars as evidence. You've made me think whether I could do without my little finger on my right hand. I think maybe I could do without it. Assuming your daughter is right handed, I don't think she should find things too difficult. If you're ever in Dublin Ireland I would be happy to meet you if that's any help.

anon163376
Post 47

My nine month old daughter was born with three fingers on her left hand (two of them fused together), but the other hand and her feet are 'normal'. We have no history of this in either of our families and are still waiting to hear from the specialist. I was wondering if anyone knows the chance of another child having this and what the treatment might entail. thanks

Martin4313
Post 44

Don't! Why should she stop hiding her hand? Everybody has flaws of some kind, physical, mental, emotional etc. Most people seem to try to hide their flaws and it takes time to discover them. I hide mine a lot less than I used to but I don't think I should make sure my hands are the first thing people notice about me.

In my experience, friends quickly forget about it and strangers don't care. And there will always be somebody who is quite ignorant about it. I was born in 1952 missing 9 digits in total. My eldest daughter is 15. In my opinion, you should let her figure it out for herself.

anon155661
Post 43

My 15 year old daughter has ectrodactyly on left hand. She is very smart and popular in school. When she was born we were very worried for her future but so far it is going well. How can we make her stop hiding her hand though? Would appreciate any ideas.

anon143519
Post 42

I am shaina and I was born with ectrodactyly. I am 25 years old and have two children, a boy and a girl, who was blessed on not having the problem I have. 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 also had a surgery to try to grow a finger on my left hand but that did not work.

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. When I got in high school my life got so much easier, no name calling and people actually liked me for me. It was great and I met people who gave my self-esteem a major boost.

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. 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.

When I was 3, my grandmother put me in therapeutic horseback riding and it was the best thing she ever did for me. it showed me that I can accomplish anything that I put my mind to and I give people who are like this a lot of respect for not letting anything stop them. I would like to work with special needs kids so they can look at my life an do whatever they want to do in life. 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!

anon142471
Post 41

I am a 42 year old woman with one finger on each hand and one toe on each foot. I have two sons, and one also has ectrodactyly, but with two fingers and two toes. We are happy, outgoing people with family like this and there are more serious conditions in this world. It is great to see other people writing their experiences. Hands up for all of the ectrodactylys out there!

anon138406
Post 40

I am 41 years old and come from a huge family that has ectrodactyly. None of my mom's siblings that have it, my siblings, or my nieces and nephews have exactly the same looking hands and feet. We are blessed to be our own support group!

I wanted to share with the Occupational Therapist that most of us are only missing a few digits, however, my son only has two and three digits on his hands and two digits on either foot. I got a PT and OT for him when he was six months old and they discharged him almost immediately. They told us that there was nothing he couldn't do if he put his mind to it and they were absolutely correct!

He is amazing! He is very popular with his peers because what he is lacking in digits, he makes up for with love and kindness! As worried as we were when he was born, we have never had to worry about getting him special help for anything. He has figured out how to do it all on his own.

For those who are worried about passing it on, as a school teacher I have seen children born with a lot worse issues than ectrodactyly. I would take this condition over many others any day.

anon108015
Post 39

My experience is with "special" needs children, not necessarily ectrodactyl.

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. Family is family and all members are part of the whole each able and should be accountable to the success of the family as they are able to participate.

Giving one "special" rules and conditions of behavior that are less than expected (for the ability of that child) is not healthy. Thanks, been there and lived it, know it and still feel it. It's not healthy.

cclack
Post 38

Hi Anon99924: My son is 13 and was born with ectrodactyl. He also was born with his right big tow dislocated but it was dislocated at the upper bone not from the foot connection. 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.

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. He finally had enough and asked me to find him a foot surgeon.

I found a great doctor and he did an incredible job on his foot. 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. He has changed my son's life.

anon99924
Post 37

I'm nearly 12 and at intermediate school. I am missing two fingers on each hand, 1 toe on my left foot, and two toes on my right foot. The big toe on my right foot is also dislocated and needs surgery. I was supposed to have this operation when i was really little but I didn't. Now it's gotten worse and I'm back on the waiting list. I've been back on it for years though, since I was eight or nine, and the doctor still hasn't operated.

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.

crc44
Post 35

ok so my boyfriend has some kind of this condition, i have no idea what kind he has and neither does he. he is the first in his family to have it as far as i know. Neither of his brothers have anything like this.

He is the middle child of three and between this middle and ring finger, on his right hand, is slightly separated, when he was born those two fingers where webbed together, he has to go into surgery and the surgeon took skin from his hip and used it to help make his hand look normal.

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. If anyone has an answer please tell me.

anon83689
Post 34

I have a beautiful son who has ectrodactyly. he is 3 1/2 years old, and he has his middle finger missing from both hands. This is an amazing forum.

I have searched the internet on many occasions for others who have this condition and any support groups out there just so i can find out more, but could find none.

Moderator's reply: We hope you found our site useful and informative! In order to remain neutral and to protect our readers' identities, we cannot facilitate the exchange of emails or other personal information.

anon82293
Post 33

My five year old son has this and he is great. We have an older daughter who was born with no abnormalities but for some reason he was, but he's still perfect. He does anything and everything. We were so upset when he was born and now we don't even think about it.

He is starting school this august and I think he will be fine. 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. he's a great kid. It only affected his left hand. He was born with only a thumb and little finger and has seen several doctors over the years and they say he's great.

anon75047
Post 32

I am 34, born with this craziness. Was bullied, had five surgeries, and believe it or not, no one notices!

I have a son, who carried on my x-linked gene, but does not have what I have. He has Autism. I am open for questions. I have met three people in my lifetime with the same (or close) to the same as mine. By hubby has deletion syndrome, and syndactyly. My child is by husband #1, no children with hubby #2. Stacey

Martin4313
Post 31

Here's a point for your report. Most comments here are anonymous. I think there should be some way for each of us to contact each other directly. I would be happy to give my email address to everybody on this forum. Then if anybody wants a direct conversation they could but only if they wished. Us older folks might be some help to the younger ones. Or maybe not, but the offer is there. Obviously I don't want my email address on the site for the spam merchants. (Unless they have or pretend to have ectrodactyly I suppose). Not that easy I suppose, is it?

anon73683
Post 30

wow! I'm doing a report on ectrodactyly. It seems pretty bad but not as bad as the other genetic disorders my classmates have to report on.

I also want to say this is a very good website filled with lots of information which is useful. thanks.

anon70253
Post 29

My daughter was born with ectrodactyly in her right hand. She is missing her middle finger. 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.

If it was a fluke, they said she would not pass it on to her children. If it is a gene she is carrying then she has a 50 percent chance of passing it on. She has been tested for the mutation in gene p63. We are awaiting the results.

I must say I have cleft palate in my family and she is being tested for ectrodactyly ectodermal dysplasia/clefting. If she doesn't have it, she cannot pass it on. Hope this helps.

anon68025
Post 28

i am 17 years old and missing my middle finger on each hand and missing the two middle toes on both my feet. the two little toes at the end are webbed together. i can do everything. i don't let it hold me back at all.

anon66139
Post 27

I'm a 22 year old male and I have ectrodactyly in my right hand and foot. I'm the first in my family to get the mutated gene.

Growing up with it has been hard in just knowing you're different from everybody else, but thanks to good family and friends I learned to accept it.

I have a girlfriend whom I've been with for five years and we're about to have our first kid, so to everyone else who has it, don't let it hold you back.

anon65636
Post 26

I can identify with Martin as I was also born in 1952, youngest of two normal parents with two normal siblings. My daughter isn't affected but my son is and is now looking at getting married and having children of his own.

I think we were blessed by the lack of information in the 50's and 60's as it made choices easier. We are only affected in our hands and feet, without the deafness and harelip/cleft palate which can be associated with this.

Does anyone know if there are possible genetic tests to rule out the latter? I agree with Martin - I can do anything except play a violin and rock climbing but tried both!

Martin4313
Post 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.

cReep
Post 24

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 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. 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.

Martin4313
Post 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.

anon40362
Post 21

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

Martin4313
Post 20

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.

anon32181
Post 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!

Martin4313
Post 18

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.

anon31652
Post 17

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!

Myers0
Post 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.

musicalbaby
Post 15

One more thing. You said "It is not recessive." Does that mean I am carrying a dominant gene for ectrodactyly?

musicalbaby
Post 14

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.

Myers0
Post 13

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.

musicalbaby
Post 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?

Martin4313
Post 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.

Myers0
Post 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.

anon21674
Post 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...

cclack
Post 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.

Myers0
Post 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.

anon20657
Post 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.

anon18594
Post 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.

cclack
Post 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.

Myers0
Post 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!

anon16531
Post 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.

Myers0
Post 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.

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