Fragile X Syndrome Support Group

Fragile X Syndrome is the most common inherited cause of mental retardation, and is associated with autism. The fragile X syndrome is a genetic disorder caused by mutation of the FMR1 gene on the X chromosome. Mutation at that site is found in 1 out of about every 4000 males and 1 out of about every 6000 females.

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  • adbh

    Carrier Status and IVF

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    Shortly after getting married almost 2years ago, a family member (cousin) shared that her three boys had all been diagnosed with full mutation Fragile X and it came from our family. She is a pre-mutation. My husband and I were terrified. We had never heard about this syndrome before and now all of a sudden, I was quite possibly affected by it. I suspected that I would be at least a carrier as my...
  • Hi,I am currently 15 weeks pregnant and found out at 13 weeks that I am carrier of the fragile x premutation with 159 repeats. I had no prior knowledge of this or knew of anyone in my family that did. I immediately got a CVS done and it was found that the baby, a girl, received the full mutation. We are so upset and really confused. I've been scouring the internet and the information on the...
  • I understand some researchers are reporting significant improvement in males with FXS using something called Lipid-Soluble Hormone Replacement Therapy. Has anyone heard of this? I can't find anything on the internet except that females normally have much milder fragile x symptoms than males. If there is anything that would improve my sons quality of life I would welcome a more feminine...
  • sher13

    Hello

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    This is my first baby, they think I am 6-7 weeks. I go in for my ultrasound on the 20. I have mutated x syndrome. I know it's different from fragile x but thought this was the closed support group to it I could find. So mutated x is when one of my x is mutated and does nothing, but given that I have another x that is healthy, it's okay. What the concern is which x is passed on to my...
  • deleted_user

    Fragile X Research

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    Does your child with fragile X have difficulties with problem behaviour? Maybe anxiety or hyperactivity has been an issue for your child?The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway are interested in hearing about your experiences with your child aged 2-17 years. Even if your child doesn't have these symptoms, we can still learn a...
  • Hi Im just on this discussion to see what its like to be a parent who has a child with fragile XI look forward to discussing various topics with you guys!
  • Hi. Sorry I don't know where else to post this.Five years ago my son met a woman who was pregnant three weeks later. We knew that she had deliberately gotten pregnant because she stupidly told us so. Oh well, kid on the way, smile, go with it!After the baby was born, it became increasingly clear that my (by then) DIL was low-functioning. I would not have categorized her as mentally impaired. I...
  • deleted_user

    IVF with PGD?

    I'm a Fragile X carrier with 75 repeats. I'm doing IVF with Preimplantation Genetic Diagnosis. Has anyone else gone this route? What was your experience?
  • deleted_user

    Daily Life

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    Hello my names cristobal and i doing a project to inform the rest of my class over Fragile X, and wanted to learn a little bit more of the struggles of day to day life
  • deleted_user

    daily life

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    What daily struggles do you face when dealing with fragile X syndrome?
  • deleted_user

    17 year old son

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    Hi, I came across the condition while looking for a genetically inherited disease to research as part of a healthcare course I was doing.My son was diagnosed at 2 and a half with dyspraxia after delayed speech and hearing problems from a very young age for which he had speeech therapy. He was also having physio therapy for the coordination problems he has. Then as the years go by his diagnosis...
  • deleted_user

    new here

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    I am taking a psychology class and as i was reading i came across the fragile x syndrome and i noticed that i have one of the symptoms that they mentioned and so i did a little research and seen more of the symptoms that i do fit. I do not know what i should i do if i should talk to a doctor or someone about it to see if i really do have the syndrome or not. Can anyone help?
  • hi there we have a little boy of 3 and a half last week he was finally diagnosed having fragile x finally the pieces all fit together, but searching online I dont know what to expect from him, what I can do to help him in nearly everyway! hes such an amazing boy but as a mum i really want to do the best by him
  • deleted_user

    Seeking information on FX

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    Hi, my son has many of the learning disability symptoms of FX, however, he doesn't portray any of the physical characterstics, but from what I read many of those characterstics don't occur until puberty. My son is only 7 currently, he's always been on the big side, tall and heavy for his age, however, we have noticed that he has grown much since last November.I am hoping that some of you could...
  • deleted_user

    Premature Ovarian Failure - FXS

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    At the age of 28 I was diagnosed with Premature Ovarian Failure I am now 34 years old. My sister (4 years younger me), had 2 children before we found out that we had Fragile X in the family we found out about 3 years ago - and was at least thankful to have some answers as to why I had POF. It was also the answer to what was wrong with my nephews 2 of her 4 children have FXS that we know of ...