living with soto syndrome

[Unregistered]

hello everyone i am living with soto's syndrome coursing through my veins
I am nineteen years old and I am 7.ft 6.in tall and I have had medical problems since birth they range from big to small and sometimes the medical problems pale in comparasion to the cruelty i have experienced growing up not only by other kids but the ignorance of adults aswell i have distanced myself and have become a bitter angery selfconscience person that i am battling to this day so i plead with you when you see something wrong with someone please keep your thoughts to yourself because you cannot understand the **** you can truly cause someone whom is different

[Stephanie Burton]

I am 25 and living with sotos syndrome. As people are unfarmiliar with the condition it is sometimes hard for people to understand where you are coming from. For example i am unable to drive. As far as work and employment goes i have always set myself challenges and am pleased to say i have completed them successfully.

It is hard for people to fully understand where you have been and the progress you have made over the years. But to real friends they are understanding and help out wherever they can.

If you would like to keep in contact with me my e-mail is behappy25@hotmail.com

[Unregistered]

hello everyone i am living with soto's syndrome coursing through my veins
I am nineteen years old and I am 7.ft 6.in tall and I have had medical problems since birth they range from big to small and sometimes the medical problems pale in comparasion to the cruelty i have experienced growing up not only by other kids but the ignorance of adults aswell i have distanced myself and have become a bitter angery selfconscience person that i am battling to this day so i plead with you when you see something wrong with someone please keep your thoughts to yourself because you cannot understand the **** you can truly cause someone whom is different

Hi!My twin daughter has Soto's.I would like to chat to you as I understand about how mean people can be!My email- hjrc@iafrica.com

Thanx!JeanXx

[Unregistered]

I am 25 and living with sotos syndrome. As people are unfarmiliar with the condition it is sometimes hard for people to understand where you are coming from. For example i am unable to drive. As far as work and employment goes i have always set myself challenges and am pleased to say i have completed them successfully.

It is hard for people to fully understand where you have been and the progress you have made over the years. But to real friends they are understanding and help out wherever they can.

If you would like to keep in contact with me my e-mail is behappy25@hotmail.com

Hi!

I sent you an email - would like us to be friends!My twin daughter called Claudia has Soto's Syndrome.

Please let me know if you got my email and if not then here is my address-

hjrc@iafrica.com

Thanx.

Jean Baumann

[wishingforhelp]

I am 25 and living with sotos syndrome. As people are unfarmiliar with the condition it is sometimes hard for people to understand where you are coming from. For example i am unable to drive. As far as work and employment goes i have always set myself challenges and am pleased to say i have completed them successfully.

It is hard for people to fully understand where you have been and the progress you have made over the years. But to real friends they are understanding and help out wherever they can.

If you would like to keep in contact with me my e-mail is behappy25@hotmail.com

i am in hopes you got my e mail about my little girl if not please letme know and i will try an e mail you again thanks

[ukcountess]

As an RN now facing long term medical issues myself and ( surprised) to be experiencing those same looks and comments from passers because I now have to wear leg splints and frequently use the stores electric scooters, I find this to be mostly people who are uneducated regarding anything outside of their own little world. I feel like shaking them to get their attention. They will push right in front of your w/c to get to what they want a little faster.
In turn I have felt incredible kindness by others who will go out of their way to help if they can.
Hold you head up high and please forgive these idiots who are so cruel. There are a lot of us out there who Do care.

[nicole798]

I am 17 years old and I have been picked on, judged and belittled my whole life because I have Sotos syndrome...
Like many of the people in this forum it has been a struggle that I have woken up to face every single day of my life..I try to forget it, to repress it, to heal the
wound that reality leaves but every time someone says something about the way that I look - even though they don't mean it in a bad way or whatever their excuse is - all of the tourment and pain comes flooding back.
I have a story that I would like to share - there are so many.
I was in my first year of high school, I didn't know many people yet, I was in art class and we were using clay to make model houses. I got up to go get some more clay and as I was leaving the table, I saw that the girls I was sitting next to had written that I was "a giant" and the other had written "yeah, what a freak". At first I was too stunned to feel pain and then it gradually sank in what they had said - I had to really try and bottle it up and keep it inside, to fake a smile. I didn't tell anyone, not even my mother until I had to see a counselor because all these incidents were really getting to me.
The counselor soothed it for a little while, it was good to talk it out and know that she was trying to help but in the bigger picture..there is nothing that anyone can do. There is no amount of self help, counseling, pep-talk, no amount of times that you say to yourself "don't listen to them", no amount of ice cream, no number of tissue boxes that you cry through that can stop the hurt. That sounds depressing - and you know what? It is! It is **** on earth because you know **** well that you can't change anything. What you gotta do though, is to hope that the past is swallowed up and repressed by your unconscious and doesn't resurface too often, you've got to find something that inspires you, makes you believe that it's you that is going to be a better person because you have been through that and it will only ever make you stronger. I know we feel weak now but there's gotta be a silver lining, there's got to be a reason for this.
There's a song that I make myself listen to every day that helps me more than anything else. It's called 'I know where I've been', it's by Queen Latifah and it's in Hairspray. I know, I know, it's actually about anti-racism but it really really helps for me. In particular, the parts that say "there's a cry asking why..I pray the answer's up ahead, coz I know where I've been" "there's a promise we must make" "but the riches will be plenty...worth the price, the price we've had to pay" "there's a dream In the future There's a struggle
That we have yet to win And there's pride In my heart 'Cause i know
Where i'm going And i know where i've been". Listen to it, it might help you, even a little.

I really hope that I can get in touch with people who have sotos syndrome and that I've helped someone out, even a little, maybe that someone relates to anything I've written. I believe that we have to stick together, and need to know that we're not alone. We need to hurt together and help each other out. We are worth so much more than people think.

Thank you for reading this. I feel blessed that I can share what I feel with people who actually have an idea what it's like and won't just go 'there there' and forget about it.

[Unregistered]

I am 17 years old and I have been picked on, judged and belittled my whole life because I have Sotos syndrome...
Like many of the people in this forum it has been a struggle that I have woken up to face every single day of my life..I try to forget it, to repress it, to heal the
wound that reality leaves but every time someone says something about the way that I look - even though they don't mean it in a bad way or whatever their excuse is - all of the tourment and pain comes flooding back.
I have a story that I would like to share - there are so many.
I was in my first year of high school, I didn't know many people yet, I was in art class and we were using clay to make model houses. I got up to go get some more clay and as I was leaving the table, I saw that the girls I was sitting next to had written that I was "a giant" and the other had written "yeah, what a freak". At first I was too stunned to feel pain and then it gradually sank in what they had said - I had to really try and bottle it up and keep it inside, to fake a smile. I didn't tell anyone, not even my mother until I had to see a counselor because all these incidents were really getting to me.
The counselor soothed it for a little while, it was good to talk it out and know that she was trying to help but in the bigger picture..there is nothing that anyone can do. There is no amount of self help, counseling, pep-talk, no amount of times that you say to yourself "don't listen to them", no amount of ice cream, no number of tissue boxes that you cry through that can stop the hurt. That sounds depressing - and you know what? It is! It is **** on earth because you know **** well that you can't change anything. What you gotta do though, is to hope that the past is swallowed up and repressed by your unconscious and doesn't resurface too often, you've got to find something that inspires you, makes you believe that it's you that is going to be a better person because you have been through that and it will only ever make you stronger. I know we feel weak now but there's gotta be a silver lining, there's got to be a reason for this.
There's a song that I make myself listen to every day that helps me more than anything else. It's called 'I know where I've been', it's by Queen Latifah and it's in Hairspray. I know, I know, it's actually about anti-racism but it really really helps for me. In particular, the parts that say "there's a cry asking why..I pray the answer's up ahead, coz I know where I've been" "there's a promise we must make" "but the riches will be plenty...worth the price, the price we've had to pay" "there's a dream In the future There's a struggle
That we have yet to win And there's pride In my heart 'Cause i know
Where i'm going And i know where i've been". Listen to it, it might help you, even a little.

I really hope that I can get in touch with people who have sotos syndrome and that I've helped someone out, even a little, maybe that someone relates to anything I've written. I believe that we have to stick together, and need to know that we're not alone. We need to hurt together and help each other out. We are worth so much more than people think.

Thank you for reading this. I feel blessed that I can share what I feel with people who actually have an idea what it's like and won't just go 'there there' and forget about it.

Thank you for sharing your story. I have a 2 year old foster boy that has just been diagnosed with Sotos. His mother refuses to acknowledge that he has any problems. I am hoping the state will let him stay with me. I have lots of questions and don't want to appear nosy but are you willing to answer some of the many questions that I have?
Thank you for your help.
Jan

[nicole798]

Thank you for sharing your story. I have a 2 year old foster boy that has just been diagnosed with Sotos. His mother refuses to acknowledge that he has any problems. I am hoping the state will let him stay with me. I have lots of questions and don't want to appear nosy but are you willing to answer some of the many questions that I have?
Thank you for your help.
Jan

Yes, I would like to answer your questions, this is not something that very many people have heard about and I would be happy to answer any questions that you might have.
Thank you for your reply.

[bernm8r]

Nicole,
My daughter has SOTOS syndrome and what I read about your story rings so true for her. She is 13 years old. Everything from the mean things kids say to how adults treat her size even family members say things that hurt the most. shoes are a nightmare, Boots forget it. Nothing her size. Where can a teenage girl get size 11 wide that looks cool? shopping for clothes destroys what self esteem she does have. I know the kids at school ridicule her and it makes it so hard to make friends. Your story impacted me and made me think harder about what it is like for her both as a parent and as a fellow human being.

Thank you.

Bernard

I am 17 years old and I have been picked on, judged and belittled my whole life because I have Sotos syndrome...
Like many of the people in this forum it has been a struggle that I have woken up to face every single day of my life..I try to forget it, to repress it, to heal the
wound that reality leaves but every time someone says something about the way that I look - even though they don't mean it in a bad way or whatever their excuse is - all of the tourment and pain comes flooding back.
I have a story that I would like to share - there are so many.
I was in my first year of high school, I didn't know many people yet, I was in art class and we were using clay to make model houses. I got up to go get some more clay and as I was leaving the table, I saw that the girls I was sitting next to had written that I was "a giant" and the other had written "yeah, what a freak". At first I was too stunned to feel pain and then it gradually sank in what they had said - I had to really try and bottle it up and keep it inside, to fake a smile. I didn't tell anyone, not even my mother until I had to see a counselor because all these incidents were really getting to me.
The counselor soothed it for a little while, it was good to talk it out and know that she was trying to help but in the bigger picture..there is nothing that anyone can do. There is no amount of self help, counseling, pep-talk, no amount of times that you say to yourself "don't listen to them", no amount of ice cream, no number of tissue boxes that you cry through that can stop the hurt. That sounds depressing - and you know what? It is! It is **** on earth because you know **** well that you can't change anything. What you gotta do though, is to hope that the past is swallowed up and repressed by your unconscious and doesn't resurface too often, you've got to find something that inspires you, makes you believe that it's you that is going to be a better person because you have been through that and it will only ever make you stronger. I know we feel weak now but there's gotta be a silver lining, there's got to be a reason for this.
There's a song that I make myself listen to every day that helps me more than anything else. It's called 'I know where I've been', it's by Queen Latifah and it's in Hairspray. I know, I know, it's actually about anti-racism but it really really helps for me. In particular, the parts that say "there's a cry asking why..I pray the answer's up ahead, coz I know where I've been" "there's a promise we must make" "but the riches will be plenty...worth the price, the price we've had to pay" "there's a dream In the future There's a struggle
That we have yet to win And there's pride In my heart 'Cause i know
Where i'm going And i know where i've been". Listen to it, it might help you, even a little.

I really hope that I can get in touch with people who have sotos syndrome and that I've helped someone out, even a little, maybe that someone relates to anything I've written. I believe that we have to stick together, and need to know that we're not alone. We need to hurt together and help each other out. We are worth so much more than people think.

Thank you for reading this. I feel blessed that I can share what I feel with people who actually have an idea what it's like and won't just go 'there there' and forget about it.