Discussions By Condition: Medical Stories

living with soto syndrome

Posted In: Medical Stories 13 Replies
  • Posted By: Anonymous
  • December 23, 2006
  • 09:20 PM

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 ***l you can truly cause someone whom is different

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13 Replies:

  • 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
    Anonymous 42,789 Replies Flag this Response
  • 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 ***l you can truly cause someone whom is differentHi!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.comThanx!JeanXx
    Anonymous 42,789 Replies
    • September 2, 2007
    • 01:36 PM
    • 0
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  • 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.comHi!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.comThanx.Jean Baumann
    Anonymous 42,789 Replies
    • September 2, 2007
    • 01:47 PM
    • 0
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  • 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.comi 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
    Anonymous 42,789 Replies Flag this Response
  • 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.
    ukcountess 9 Replies Flag this Response
  • 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 ***l on earth because you know ***n 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.
    nicole798 2 Replies Flag this Response
  • 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 ***l on earth because you know ***n 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
    Anonymous 42,789 Replies
    • September 5, 2009
    • 07:35 PM
    • 0
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  • 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.JanYes, 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.
    nicole798 2 Replies
    • September 7, 2009
    • 07:54 AM
    • 0
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  • 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.BernardI 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.
    bernm8r 1 Replies
    • October 23, 2012
    • 04:46 AM
    • 0
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  • Hello everyone. I have read with interest all the replies to this thread. I'm in a little different situation . . . I have a 25 year old son who was diagnosed with Sotos-like Syndrome at age 4. It has been quite a ride for all of us in his 25 years . . . a lot of ups and downs. We saw a well-known geneticist early on who gave us so much incredible information, help and support along the way. Thatcher is outgoing and gregarious, which I believe has helped all of us cope with his condition. In other words, even with his distinct learning disabilities and the fact that he looks "different", he was never depressed about his condition, although he never really understood it until he was in his 20's. The most difficult hurdles for us was dealing with teachers who wanted to label him and dismiss any notion that he could "excel" in anything! He's in community college, and although it is taking him 4 years to get a 2-year associate's degree (with hours of help from us), it looks like he will accomplish this task. He has had lots of issues with a job . . . trouble with authority figures and staying on task. He is still determined to work after school, however. We've cried a lot of tears, gone through periods of intense anger and frustration, and have so many questions still unanswered after 25 years. My husband and I continue to tell each other that "God gives extraordinary challenges too extraordinery people!" We truly believe this. But, through it all, Thatcher is the life of the party (so to speak), and for that we are so grateful. Let me know if I can help anyone out there!
    Linda Carter 1 Replies
    • December 6, 2012
    • 05:39 PM
    • 0
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  • This is completely normal. These are symptoms that you are starting to wonder about your existence, and the purpose of life.
    william22 2 Replies
    • December 20, 2012
    • 07:42 PM
    • 0
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  • I can't tell you how encouraging it is to hear from other people with experience of living with Sotos. It's incredibly isolating.My husband and my daughter both have the condition. They were only diagnosed 4 years ago so my husband lived all his life without understanding why he needed extra help with learning, why he was bigger than other people, why he did not fit in as others did.My daughter is 11, just started high school and we are supporting and facilitating her in every way we can. However, as you know, living with Sotos can be incredibly difficult - the eating, the anxiety, the height, the hypermobility, the inability to understand social cues - without even considering how education impacts on her.To make matters more complicated (because they were not complicated enough) she was diagnosed with diabetes last year. We are struggling to come to terms with this, as it is heightened by the sotos. We are also struggling to get our health professionals to deal with both conditions together as they have a huge knock on effect - anxiety can affect blood sugar, pain affects blood sugar (especially her inability to tell the level of pain as pain is just pain), the eating, and the importance of hand washing.I'm being specific, and many of you know from first hand experience and you don't have to be told. However, as an 'outsider' looking in and trying to help her, each of these things adds layers of complexity.We are trying to access good medical care and education so that she 'fits in' in her school life, with her peer group, and lives an ordinary life.We are learning every single day and can offer some support and encouragement to other families, and would value some as well.Thank you, Purple
    Purple_Lady 1 Replies
    • January 22, 2013
    • 11:47 AM
    • 0
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  • Hi Purple, my son is 18 months and was just diagnosed with sotos. Im learning how to deal with it. He is having trouble walking, he eats a lot it seems as if he never gets full. He weighs 40 pounds and is very tall. Is he qualified to receive disabilty benefits for sotos syndrome?
    Anonymous 1 Replies
    • February 19, 2014
    • 04:36 PM
    • 0
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