July 22, 2008 is National Fragile X Awareness Day

Fragile X Awareness Day - Today, July 22, 2008 is Fragile X Awareness Day
@schulzie (4061)
United States
July 22, 2008 8:04am CST
Today, July 22, 2008 is National Fragile X Awareness Day. Do you or someone you love have Fragile X Syndrome or are you or someone you know a carrier of Fragile X Syndrome? I am a carrier of Fragile X Syndrome and 3 of my 4 children have it. Now, you may be asking yourself, what is Fragile X Syndrome? It is the most common cause of inherited mental impairment. As today is National Fragile X Awareness Day, I would like to enlighten everyone here on myLot about this syndrome that is so very important in my everyday life: What is Fragile X Syndrome? Fragile X syndrome is the most common known cause of intellectual disability, also known as mental retardation, and developmental disability that can be inherited (passed from one generation to the next). Physical and behavioral signs that a child has fragile X syndrome include:• Not sitting, walking, or talking as early as other children (this is known as having developmental delays) Learning disabilities Speech and language delays Behavioral problems such as attention-deficit/hyperactivity disorder (ADHD) Children often have a typical facial appearance that gets more noticeable with age. These features include: A large head A long face Prominent ears, chin, and forehead Males who have fragile X syndrome usually have some degree of intellectual disability that can range from mild to severe. Females with fragile X syndrome can have normal intelligence or some degree of intellectual disability with or without learning disabilities. Autism spectrum disorders also occur more frequently in children with fragile X syndrome. What Causes Fragile X Syndrome? (FXS) FXS, short for Fragile X Syndrome, is caused by a change (mutation) in a gene on the X chromosome. Genes contain codes, or recipes, for proteins. Proteins are very important biological components (parts) in all forms of life. The gene on the X chromosome that causes FXS is called the Fragile X Mental Retardation 1 (FMR1) gene. The FMR1 gene makes a protein that is needed for normal brain development. This protein is not made in individuals who have FXS. My 11 year old son is Mentally Retarded due to Fragile X Syndrome. My two daughters are affected as well, though not the degree that my son is. If you would like to further read up and investigate Fragile X Syndrome please click the following two urls to take you to the most popular Fragile X sites. http://www.fragilex.org/html/home.shtml http://www.fraxa.org/ Thank you for reading my message and hopefully this will help some parents out there who have loved ones with this syndrome. If your child has delayed development, delayed speech, autistic symptoms, hand flapping, hand biting, sensory integration issues, please see your pediatrician to have them perform a simple blood test to rule out or diagnose Fragile X Syndrome.
4 people like this
2 responses
@GardenGerty (169568)
• United States
22 Jul 08
Schulzie, I have worked to support children with this diagnosis in the classroom. I now work with adults with developmental disabilities. It may be that the features are different in fragile x, but not as well known. I had heard of it, because a well known family in our community spoke about it to the newspaper. The family has two sons, they are fragile x. Mom went back to school and became a teacher of special needs students, that dad is a social worker in child protective services. The adult sons live in homes in our program. I have not, however, heard much about girls with fragile x.
1 person likes this
@schulzie (4061)
• United States
22 Jul 08
Wow! I am so surprised that someone else has heard of it. All of the schools that my children have been in have teachers that had never ever heard of it before my children were in their classes. I even went to the extent of buying the materials for the teachers when I attended the bi-annual Fragile X conferences that are held. I am so glad to hear that you have worked in special education and now work with disabled adults. Thank you for providing this service to our community and to people like my children. This is a subject that is so close to home for me - literally.
2 people like this
@GardenGerty (169568)
• United States
22 Jul 08
Most of the special needs kids in the county with the highest needs attended school at the school my children went to. I work with adults now that I saw as kindergarteners.
1 person likes this
@Lakota12 (42600)
• United States
22 Jul 08
this was real interesting thankks for posting. Learn something new every day here
1 person likes this