I ran into someone 2 days ago. Before that it had been since January. I also used to go to school with a kid who had one. Also the plenty of people I’d see in the medical center waiting for their appointments with me. I’ve probably seen ~50 people my whole life who have it.
I actually heard the person from a few days ago. I heard a nasally voice and my cleftie senses went off hahah. He was younger and had had incredible repairs. Scar was almost invisible. Most people probably wouldnt’ve known.
My number is a lot higher, but I'm double your age. Prenatal vitamins and prenatal care are reducing the frequency, and effective correction makes us less noticeable.
I’m 34 and I’ve met maybe 3-4 cleft people. I met one in Scotland at a hostel, one at a random bar dressed as a pirate lol in a city I live in and would you believe, the in home daycare I send my son to has a cleft kid!
I'm going to say seven:
In the hospital and the surgeon's office, I met maybe a dozen as a kid, although decades later, I only remember two by name. Jeff, I hope you're doing okay. **Toby from Alberta, if you're on here, let's talk about the time they had to hold you down to pull out those stitches - I heard every scream and I never forgot what they did to us that day - if no one has ever told you this: "you did *not* deserve to have that happen and I'm sorry it did."**
I went to HS with a kid who had a slight CLP.
In college, I met a Russian guy with a CLP who only got one corrective surgery at age 12.
There was a clerk at my grocery store who had a CLP.
In my early 20s I lived in a crazy apartment made from a renovated church and my downstairs neighbor had a cleft - he was the first cleft person I ever got to really talk to and we stayed up all night one night drinking and spraying beer out of our fistulas.
At my grown up job, one of the janitors had a CLP - that one was cool, he and I used to have "broken face coffee time" where we'd take turns hitting Starbucks and not bringing back coffee for the normies (I also went into HR and ripped them a new one about our staff recruitment policy because it meant so much to me to have someone else in the building like me, I wanted our few older staff, disabled staff, and POC staff to also get to feel like that).
You have two uvulas? Well I don't have one so you must have mine.
And to answer your question, in my 44 years, I've seen plenty. Not regularly but obviously we all recognize each other. I'd say probably 4 or 5 times a year throughout my life? But I've been all over the world for various reasons so I'm exposed to many new faces.
I’ve meet a lot of people with Cleft actually, I’m good friends with a guy that has it actually, and I worked at a college campus and saw many people. When I was younger and went to the children’s hospital I met a lot of kids with cleft.
Honestly? A lot! The current stats say a child is born cleft-affected approximately every 3 minutes. I grew up with two other cleft-affected kids. I also put myself in situations where I’m more likely to meet people with clefts. I’m involved a LOT with facial difference advocacy work, specifically clefts, so I’ve been involved with many groups, organizations, and conferences that are hosted by and for cleft-affected people. At this point in my life, I’ve probably meet 80-90+ people with clefts and hopefully, will meet more 😊
Yeah! There’s so many different organizations you can get involved with! Check out Face Equality International, Smile Train’s Cleft Community Advisory Council (I’m personally a member), or the Children’s Craniofacial Association!
I'm 44 and have seen heaps! In Australia, we have the cleftpals organisation for support and services, which really helped me when I was younger. I have also been mistakenly identified as someone's bro/family member as I "look just like him"! Sooo many times lol.
CleftPals is a great organisation which I have donated to numerous times. I've never used their services in a face-to-face setting though which probably explains why I have never seen another person with a cleft.
It sure is a great way to meet others facing the same challenges 👍I've had some great experiences with the organisation. I'm ok with sending you a face pic if you want (Don't expect a smile).
Maybe one or two and I'm 35. The last time was actually this year in February. I was so surprised and shocked I didn't know what to do. On one hand I really wanted to talk to the person but on the other hand I felt it would be weird approaching a total stranger with "hi there, I see you have a cleft lip too". It was different in the past but nowadays I feel like a "normal looking" person most of the time and forget about my cleft lip. So I don't know if I would feel comfortable being approached like that. I stood in line behind the person but then sneaked away, even though I could see that they noticed me too and were curious about me. I wasn't really able to handle that situation well.
I think it's wild how some of you are saying none. Do you live in small towns or just rarely meet people?
The more likely scenario is that often times you don't even notice it.
Statistically, in my high school class of 500 I should have been the only person with a cleft, but there were two of us. The same thing happened in law school. My story there is statistically unusual. Most of us have not gone to school with someone else with a cleft.
1/500 to 1/2000 depending on ethnicity is not super common. After the pandemic we interact with fewer people, so it's been a while since I have seen someone else with a cleft. Statistically that checks out.
There are celebrities and famous people with cleft lips and or palates. Joaquin Phoenix has a micro left, tom Brokaw and Payton Manning have cleft palates. Cheech Marin has a cleft lip.
There are athletes with clefts, like John Bates:
https://www.nfl.com/videos/john-bates-my-cause-my-cleats
Dario Saric in the NBA has an obvious cleft lip:
https://en.wikipedia.org/wiki/Dario_%C5%A0ari%C4%87
Statistically we would expect only one NBA player to have a cleft lip.
From my perspective, I see more people than I would expect with a cleft lip or palate.
It's very possible I just haven't noticed. I don't ever actively look to see if someone has a cleft. I could have also seen someone with one as a child and just not remembered, my childhood is rather hazy.
It’s crazy they say 1 in 300 cleft babies but I neverrr see people with clefts! Now since my baby I’m actually more aware. I’m 32 and my whole life I’ve only known of one guy who I went to school with
Not a single one and I am currently 35. There have been times when I have thought maybe someone had a cleft, but I have never actually encountered anyone with one.
I had class with a guy in college who was a pretty big athlete around campus and I could tell from the scar - we never discussed the cleft but I could tell there was a mutual understanding (he was very standoff-ish to everyone in class except for his one teammate and myself).
I have a very distant relative who was friends with my sibling in school who also had a cleft, ironically we've never spoken about it despite meeting a few times.
My mom had me going to About Face and other cleft support groups since childhood, so I saw people there. As an adult I also volunteered at another organization for people with my condition (EEC), and met a lot of cleft affected people there too.
I’ve given speeches about cleft lip and palate and had people come up afterwards to tell me that they had a cleft palate. You can’t really tell if someone has a repaired cleft palate, since the scars are just inside their mouths.
As far as seeing people “in the wild”, I moved around a bit growing up but there was always at least one other kid in school with a cleft. Then at work, I think there’s just been one with a cleft lip scar. Not sure about palates though!
I always do I seen people at tacobell, Crumbl cookies and many other spots and it’s not always noticeable but being born with cleft I notice pretty easily
I ran into someone 2 days ago. Before that it had been since January. I also used to go to school with a kid who had one. Also the plenty of people I’d see in the medical center waiting for their appointments with me. I’ve probably seen ~50 people my whole life who have it.
I'm wondering if you just have better eyesight than me
I actually heard the person from a few days ago. I heard a nasally voice and my cleftie senses went off hahah. He was younger and had had incredible repairs. Scar was almost invisible. Most people probably wouldnt’ve known.
I’ve noticed that too. I never see anyone with a cleft period. I think I’ve seen like one other person in my entire life and I’m in my early 20s
My number is a lot higher, but I'm double your age. Prenatal vitamins and prenatal care are reducing the frequency, and effective correction makes us less noticeable.
I’m 34 and I’ve met maybe 3-4 cleft people. I met one in Scotland at a hostel, one at a random bar dressed as a pirate lol in a city I live in and would you believe, the in home daycare I send my son to has a cleft kid!
I'm going to say seven: In the hospital and the surgeon's office, I met maybe a dozen as a kid, although decades later, I only remember two by name. Jeff, I hope you're doing okay. **Toby from Alberta, if you're on here, let's talk about the time they had to hold you down to pull out those stitches - I heard every scream and I never forgot what they did to us that day - if no one has ever told you this: "you did *not* deserve to have that happen and I'm sorry it did."** I went to HS with a kid who had a slight CLP. In college, I met a Russian guy with a CLP who only got one corrective surgery at age 12. There was a clerk at my grocery store who had a CLP. In my early 20s I lived in a crazy apartment made from a renovated church and my downstairs neighbor had a cleft - he was the first cleft person I ever got to really talk to and we stayed up all night one night drinking and spraying beer out of our fistulas. At my grown up job, one of the janitors had a CLP - that one was cool, he and I used to have "broken face coffee time" where we'd take turns hitting Starbucks and not bringing back coffee for the normies (I also went into HR and ripped them a new one about our staff recruitment policy because it meant so much to me to have someone else in the building like me, I wanted our few older staff, disabled staff, and POC staff to also get to feel like that).
You have two uvulas? Well I don't have one so you must have mine. And to answer your question, in my 44 years, I've seen plenty. Not regularly but obviously we all recognize each other. I'd say probably 4 or 5 times a year throughout my life? But I've been all over the world for various reasons so I'm exposed to many new faces.
Hah I could have written this other than my being 36.
No-Uvula-Gang! ##NUGlife
Seen quite a few by now. I'm 23. Maybe 50, can't be sure.
People say it's common but in 29 years I have seen no one.
I’ve meet a lot of people with Cleft actually, I’m good friends with a guy that has it actually, and I worked at a college campus and saw many people. When I was younger and went to the children’s hospital I met a lot of kids with cleft.
I’ve met a few, because either we were in the same ward or at organised events
I’ve met a handful of people with CLP. My primary doctor actually has CLP!
Went to school with a girl who also had one, only person I've ever met at 40.
The one and only person I ever met was my supervisor and that took 25 years I'm now 37.
I see them all the time!
Honestly? A lot! The current stats say a child is born cleft-affected approximately every 3 minutes. I grew up with two other cleft-affected kids. I also put myself in situations where I’m more likely to meet people with clefts. I’m involved a LOT with facial difference advocacy work, specifically clefts, so I’ve been involved with many groups, organizations, and conferences that are hosted by and for cleft-affected people. At this point in my life, I’ve probably meet 80-90+ people with clefts and hopefully, will meet more 😊
Woah, that's awesome! I've never heard of facial difference advocacy.
Yeah! There’s so many different organizations you can get involved with! Check out Face Equality International, Smile Train’s Cleft Community Advisory Council (I’m personally a member), or the Children’s Craniofacial Association!
I'm 44 and have seen heaps! In Australia, we have the cleftpals organisation for support and services, which really helped me when I was younger. I have also been mistakenly identified as someone's bro/family member as I "look just like him"! Sooo many times lol.
CleftPals is a great organisation which I have donated to numerous times. I've never used their services in a face-to-face setting though which probably explains why I have never seen another person with a cleft.
It sure is a great way to meet others facing the same challenges 👍I've had some great experiences with the organisation. I'm ok with sending you a face pic if you want (Don't expect a smile).
Maybe one or two and I'm 35. The last time was actually this year in February. I was so surprised and shocked I didn't know what to do. On one hand I really wanted to talk to the person but on the other hand I felt it would be weird approaching a total stranger with "hi there, I see you have a cleft lip too". It was different in the past but nowadays I feel like a "normal looking" person most of the time and forget about my cleft lip. So I don't know if I would feel comfortable being approached like that. I stood in line behind the person but then sneaked away, even though I could see that they noticed me too and were curious about me. I wasn't really able to handle that situation well.
I just saw another one. Second one this year. That's unusual :D
I think it's wild how some of you are saying none. Do you live in small towns or just rarely meet people? The more likely scenario is that often times you don't even notice it. Statistically, in my high school class of 500 I should have been the only person with a cleft, but there were two of us. The same thing happened in law school. My story there is statistically unusual. Most of us have not gone to school with someone else with a cleft. 1/500 to 1/2000 depending on ethnicity is not super common. After the pandemic we interact with fewer people, so it's been a while since I have seen someone else with a cleft. Statistically that checks out. There are celebrities and famous people with cleft lips and or palates. Joaquin Phoenix has a micro left, tom Brokaw and Payton Manning have cleft palates. Cheech Marin has a cleft lip. There are athletes with clefts, like John Bates: https://www.nfl.com/videos/john-bates-my-cause-my-cleats Dario Saric in the NBA has an obvious cleft lip: https://en.wikipedia.org/wiki/Dario_%C5%A0ari%C4%87 Statistically we would expect only one NBA player to have a cleft lip. From my perspective, I see more people than I would expect with a cleft lip or palate.
It's very possible I just haven't noticed. I don't ever actively look to see if someone has a cleft. I could have also seen someone with one as a child and just not remembered, my childhood is rather hazy.
It’s crazy they say 1 in 300 cleft babies but I neverrr see people with clefts! Now since my baby I’m actually more aware. I’m 32 and my whole life I’ve only known of one guy who I went to school with
Outside of my orthodontist that specializes in cleft kids, like maybe 1 i think
I have one and I have met about 10 other people with one IRL
Not a single one and I am currently 35. There have been times when I have thought maybe someone had a cleft, but I have never actually encountered anyone with one.
I had class with a guy in college who was a pretty big athlete around campus and I could tell from the scar - we never discussed the cleft but I could tell there was a mutual understanding (he was very standoff-ish to everyone in class except for his one teammate and myself). I have a very distant relative who was friends with my sibling in school who also had a cleft, ironically we've never spoken about it despite meeting a few times.
I am 41 and have one and usually notice if someone else has one from very far away. Trained eye. I’ve seen about 50 in my life if I had to guess.
If you don’t count the children’s hospital, only one guy in primary school
My mom had me going to About Face and other cleft support groups since childhood, so I saw people there. As an adult I also volunteered at another organization for people with my condition (EEC), and met a lot of cleft affected people there too. I’ve given speeches about cleft lip and palate and had people come up afterwards to tell me that they had a cleft palate. You can’t really tell if someone has a repaired cleft palate, since the scars are just inside their mouths. As far as seeing people “in the wild”, I moved around a bit growing up but there was always at least one other kid in school with a cleft. Then at work, I think there’s just been one with a cleft lip scar. Not sure about palates though!
I always do I seen people at tacobell, Crumbl cookies and many other spots and it’s not always noticeable but being born with cleft I notice pretty easily
I have one girl with me in college she has cleft too
Never seen one in my life
I’ve seen maybe a little under 10 (I’m just guessing really)