Discussions By Condition: Congenital conditions

I have KFS

Posted In: Congenital conditions 14 Replies
  • Posted By: Anonymous
  • March 31, 2006
  • 03:29 AM

Hello my name Rodney Chaisson and I was born with KFS. It has been hard for me to talk to anyone about this.No one I talk to really understands what it is , and all I can tell them is what I know. My parrents have been there for me all my life helping me deal with the name calling. they themelves don't know much either, but try and help me as parrents do. I have a beautiful wife who has neve looked at me any different than my family has. she loves me very much and tries to be like a second mom to me. If it weren't for her I don't know what I would do. I hope my kids never have to go through the type of life I had. Both of my sons, thank god, have not yet been diagnosed with KFS. My oldest son does have a slight speech problem, but we are helping him with it.

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14 Replies:

  • my son was born with rare diseases, too. not sure what kfs is but would love to talk with you... his doctors keep but more rare disorders on him with no real reasoning....just a way for them to pretend to know what their talking about I guess.....
    Anonymous 42789 Replies
    • November 18, 2006
    • 02:00 PM
    • 0
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  • I also have KFS and although presented with many symptoms as a child was not diagnosed until I was in my 30s. I had a cervical fusion in 2001 of C3-C5 and also have Sprengel's Shoulder. Life hasn't been easy and I am still looking for a physician who understands KFS as I want to keep working enjoying my life but seem to have more pain as I get older. I have 2 children who do not have KFS luckily. I think the most important thing is to have doctors who are knowledgeable or at least able to treat the symptoms and family that is supportive.
    Anonymous 42789 Replies
    • February 4, 2007
    • 05:59 PM
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  • im 21, i have kfs. i'm now depressed because of the name calling and feeling like an outsider all my childhood. i have limited mobility in my neck and its embarassing.
    Anonymous 42789 Replies
    • February 25, 2007
    • 04:54 PM
    • 0
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  • I was born with Fetal Alcohol Syndrome, and 3 years ago my chiropractor was doing some x-rays because I was diagnosed with Pelvic Instability Syndrome, and he walked in the exam room and said I was a very lucky person and that I should not be walking, due to the fact that I am missing a vertebrae in my spine, no curvature in my neck along with 2 ribs and many other abnormalities. And for some reason up until know it did not dawn on me to research what this could be related to besides the FAS. Well come to find out that all of my symptoms are related to KFS which was caused by the FAS. The teasing I recieved as a child has hurt me through out my adult life, but I have been very blessed with a wonderful amazingly aceeptable husbnad and family and 2 beautiful children. As long as there are support systems like this one out there people with disabilities are never truly alone.
    Anonymous 42789 Replies Flag this Response
  • Those who stoop to making fun of others are just doing it because of their own personal inadequacies, things that can't necessarily be seen. To make themselves feel better and boost their own low self-esteem, they make fun of others who have visible disabilities or problems. Cruel doesn't even begin to describe the behaviour really.Whenever you feel down, just think of your own perseverance. Look at the last poster for example- she shouldn't even be able to walk yet can. You have loving families and, in some cases, spouses and even kids. When push comes to shove that is all that really matters. Never let yourself feel undesirable or unwanted because if you ask me, it's people like you who have far more to contribute to the world and make it a better place.
    Anonymous 42789 Replies Flag this Response
  • Those who stoop to making fun of others are just doing it because of their own personal inadequacies, things that can't necessarily be seen. To make themselves feel better and boost their own low self-esteem, they make fun of others who have visible disabilities or problems. Cruel doesn't even begin to describe the behaviour really.Whenever you feel down, just think of your own perseverance. Look at the last poster for example- she shouldn't even be able to walk yet can. You have loving families and, in some cases, spouses and even kids. When push comes to shove that is all that really matters. Never let yourself feel undesirable or unwanted because if you ask me, it's people like you who have far more to contribute to the world and make it a better place.I agree with this. I came to this forum because my husband and daughter have Marfan's; but your topic hit very close to home. People will tease other people no matter what the cause, because they themselves have social issues. I myself was teased most of my life for something which is completely normal for me (small breasts). Other people are teased for other things, some real, some perceived. There is one thing in common with people who tease: feelings of inadequacy and a great deal of immaturity. Please try to not let it make you feel bad about who you are. I was unsure of what KFS was so I googled some pictures. While it looks like an unfortunate disorder to have, I wouldn't call it a real cosmetic concern . In other words, I didn't think any of the people were "unattractive". And it sounds like your wife feels the same way. Like the poster above me said, remember your accomplishments and all that you have to offer. As the old cliche' goes: Big minds talk about ideas, average minds talk about events and small minds talk about people. The people who made fun of you definitely belong in the "small minds" group. Take care and God bless!
    Anonymous 42789 Replies Flag this Response
  • ACUPUNCTURE is amazing. I have KFS and by the age of 30 was in a whole lot of pain. After the first session, I had no pain for a day, after the first week, no pain for a couple of days, and after three or four months, virtually no pain at all. I still go once a month just to keep it all in check but it's a whole new world. Good Luck.
    leighleigh 1 Replies Flag this Response
  • i know how yea feel i am 22 and have kfs and hate getting made fun of. i havent been to the doctor for a check up in a long time i have no medical insurance so i just hope my condition doesnt worsen
    chrisie 1 Replies Flag this Response
  • im 21, i have kfs. i'm now depressed because of the name calling and feeling like an outsider all my childhood. i have limited mobility in my neck and its embarassing. Hi, I have been through same. Its unfair. I dont have many friend cos i dont like to go out much :(
    Kym2010 4 Replies Flag this Response
  • i know how yea feel i am 22 and have kfs and hate getting made fun of. i havent been to the doctor for a check up in a long time i have no medical insurance so i just hope my condition doesnt worsen Hi, I too have KFS, am 28. I havent see my doctor for ages, I think the last time was when i was about 16. But my GP told me that with KFS wont get any worsen. Kym
    Kym2010 4 Replies Flag this Response
  • Hi, I too have KFS, am 28. I havent see my doctor for ages, I think the last time was when i was about 16. But my GP told me that with KFS wont get any worsen. Kymwell i am 27 now and i have quit my job and started to receive disablity income. i realy did not wnat to do this but with all the pain i was in, i had no choice. now that io am not working, it seems like i hurt more.
    Anonymous 42789 Replies Flag this Response
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  • Sorry to hear ur pain. I know its not easy to work....i do get sore back sometimes from doing too much things...
    Kym2010 4 Replies Flag this Response
  • im 21, i have kfs. i'm now depressed because of the name calling and feeling like an outsider all my childhood. i have limited mobility in my neck and its embarassing.Well, I'm so sorry that any of you that had to death with harassment for who you are. I have KFS and I'm 18 years old. I was diagnosed when I was 6. I've only been made fun of a few times in my life when I was in elementary school. Now that I'm older, most of the time people just stare. Don't let people bring you down. I've been stared at all my life and I just got sick of it. I now walk up to people that stare at me and let them know that it's disrespectful and it's even more belittling than their words. I think I'm stronger than I was before. I used to be so upset because, my twin sister got the perks of all the medical problems and I got s h i t. She's beautiful. I used to be severely depressed and suicidal. I'm still trying to find strength. Anyone that doesn't have strength...work harder and please don't give up.
    Anonymous 42789 Replies Flag this Response
  • Hello my name Rodney Chaisson and I was born with KFS. It has been hard for me to talk to anyone about this.No one I talk to really understands what it is , and all I can tell them is what I know. My parrents have been there for me all my life helping me deal with the name calling. they themelves don't know much either, but try and help me as parrents do. I have a beautiful wife who has neve looked at me any different than my family has. she loves me very much and tries to be like a second mom to me. If it weren't for her I don't know what I would do. I hope my kids never have to go through the type of life I had. Both of my sons, thank god, have not yet been diagnosed with KFS. My oldest son does have a slight speech problem, but we are helping him with it.Hi Rodney, I have Klippel Feil Syndrome too. I'm 58 and am beginning to deal with some of the physical wear-and-tear on my messed-up vertebrae and discs, in other words with pain. I can definitely relate to anyone who has residual trauma from brutal childhood torment for physical differences. That stuff really shouldn't be called "teasing," because it's really more like torture. I have Posttraumatic Stress Disorder stemming from those and some other childhood experiences compounded by more recent workplace harrassment at a place I'd worked for ten years. No one can ALWAYS be strong. I've usually had one or two people who were willing to listen to me and learn what I was going through and help me deal with it. For me, the people I rely on most right now are my psychiatrist, who essentially saved my life during the workplace trauma and ensuing PTSD, and my husband of almost 25 years. I belong to an online Google support group for adults with Klippel Feil Syndrome and have found it very helpful as well. I hadn't really *believed* anyone else had this thing. Perhaps you'll want to check it out ... it's in google.com -> More -> Groups -> Klippel Feil Syndrome.It's only my opinion, but I think people with disabilities often have a balancing quality in their character, such as kindness, decisiveness, or understanding, and can be "wounded healers" who help make the world around us better. ((hug))
    Anonymous 42789 Replies Flag this Response
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