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National Fragile X Awareness Day – July 22

National Fragile X Awareness Day – July 22

July 22 is National Fragile X Awareness Day. 

Chances are that you’ve never heard of it, but Fragile X Syndrome is the most common cause of inherited intellectual disability affecting an estimated 1 in 4,000 males and 1 in 6,000-8,000 females.

It is not contagious or the result of a particular behavior, but is passed from one generation to another. Fragile X is a group of disorders caused by a mutation in a gene on the X chromosome. It may be carried by both males and females and can be diagnosed through DNA testing.

The Centers for Disease Control lists these physical and behavioral signs as an indication of Fragile X:

- 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.

There is currently no cure for Fragile X. Diagnosis, education, and intervention (speech and language therapy, behavior therapy, physical therapy, etc.) can greatly improve the lives of those affected. In some case, medication is also beneficial. The physical, emotional, and financial impact on the family is profound.

How can you help? The House Resolution (H.RES.611) in support of the goals and ideals of “Fragile X Awareness Day” is still in need of co-sponsors. You can further the cause of Fragile X awareness and funding by asking your representative to co-sponsor the bill if they have not already done so.

The resolution “urges physicians and health providers to utilize available diagnostic, developmental screening and surveillance modalities to better diagnose Fragile X-associated Disorders, private and public health insurance entities to provide full coverage for these diagnostic tools, and the National Institutes of Health (NIH) and related member institutes to fully implement the NIH Research Plan on Fragile X Syndrome and Associated Disorders.”

On March 3 of this year, U.S. Representative Gregg Harper (R-MS) issued this statement:

“As the only member of Congress who has a child with Fragile X, I understand the challenges that face thousands of families who experience this condition. “My wife, Sidney, and I are committed to making sure there is increased awareness and funding to help those families who are blessed with a child with Fragile X.”

 

Answer the Call to Action today.

 

For more information about Fragile X Syndrome:

Centers for Disease Control: Learn More About Fragile X Syndrome

Centers for Disease Control: What Health Problems Can Affect People Who Have a Fragile X Premutation?

Fraxa Research Foundation

National Fragile X Foundation

National Institutes of Health: NIH Issues Research Plan on Fragile X Syndrome and Associated Disorders (7/20/09)

Read more: , ,

Photo credit: FragileX.org


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13 comments

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2:45PM PDT on Jul 16, 2011

mary M who spouted off a lot of garbage is not a real person..no nothing on the page..so its just a fake piece of garbage.

Glad we are all learning this today..never heard of it.. will know for the future though..

2:39PM PDT on Jul 16, 2011

WOW some of you are some real sick people. Maybe you should be more open minded and learn a bit more about people who have Fragile X before opening your mouths. First off your language in describing someone with a DISABILITY is just disgusting. To openly use the R word like it is nothing. Second of all I know first hand that FX is a real condition. I live with it everyday I have 3 children with it. And I wouldnt change a thing. Also to the person who posted about the wikipedia stats those are stats for the people at that part of the mutation if you read the full reply it will have the same stats that this site has too. Here is the full reply. There are different mutations of the disorder. You cant just read one part and not the full sentence.

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 2000 males and 1 out of about every 259 females. (Incidence of the disorder itself is about 1 in every 3600 males and 1 in 4000–6000 females.)

And as for the ones that say I should not have children because of it maybe you need to learn a bit more before you speak. There is a 50/50 chance for the child to get the disorder passed on. And no I will not murder my unborn child just because of they have it. Trust me my kids could teach you about life. I feel you need to be sterilized and not allowed to breed so we wont have ignorant people in the world anymore.

8:42PM PDT on Jul 24, 2009

Lynette B., let me get this straight. You think Fragile X is a fake condition? Well, go ask your doctor if you don't believe that it exists. Maybe he/she can show you an image of the damaged X chromosome that causes it (there was a picture of it in my grade 12 biology book). In case you hadn't noticed, pretty much every medical condition in existence has symptoms in common with other conditions. I doubt there is a single symptom that is only attributed to one medical condition. Your first argument is therefore completely unfounded. Secondly, you probably do know someone with a Fragile X child, but just aren't aware of it. Since you don't even believe in the disorder, I highly doubt you'd be able to spot it. And thirdly, you misread Wikipedia's article. "Mutation at that site is found in 1 out of about every 2000 males and 1 out of about every 259 females. (Incidence of the disease itself is about 1 in every 4000 females.)" Note the part in brackets, it makes a world of difference. I don't think Wikipedia even had a source for these stats, though. Anyway, chances are that the two articles' numbers come from different countries or studies, so you can expect them to be different.

Mary M., YOU are the one who should not be breeding lest you pass on your closed-minded, Nazi-like attitude to your children.

8:22PM PDT on Jul 24, 2009

If you did look at it from an evolutionary stand point, then according to the Darwinian theory of Natural Selection, this undesirable form of the gene would be naturally eliminated over time. Obviously this has not been the case. I would bet that the numbers have increased over time. This means that as far as nature is concerned it is not that undesirable. This syndrome, as with many others, has become a stigma. Many people think if a child is slow to walk or learn, that they must be “retarded”. If we as a society were to resort to screening those who want to be conceive a child, nobody would be “allowed” to have children. Every human carries some sort of ailment that is considered undesirable. No one has perfect DNA.

5:23AM PDT on Jul 24, 2009

Sally, as I said, perhaps DS is not concidered inherited, though of course it would be if people with Ds could have children.
Most people are simply uninformed, as Mary M. The very sad truth is that MOST people believe as she does. "We shouldn't be breeding these defects". Looked at from an evolutionist, Darwinian perspective, can you blame them? This is exactly how Hitler got millions of people to stand by and do nothing when millions were led to death camps. They were told thet only defective people who were breeding more defective people would be "taken out" of society. It began of course with the mentally retarded. Another thing we must note NAZI'S WERE VOTED IN TO POWER! In every case, the people voted them in, believing the lies that were told so they could KEEP THEIR STUFF AND LIVESTYLES! Sound familiar? It should. With this supposed "health care reform" we are already being TOLD BY BO that certain people with health care problems should go into hospice. That means go to a place to die. THAT IS EXACTLY WHAT THE AUSTRIAN PEOPLE WERE TOLD. Then the brown shirts came in and "took" the mentally retarded away to "schools" to be "retrained". In actuality they were taken to doctors to preform tests, including tests on the gas chambers, biological warefare, etc. IT is true, those who refuse to study history are doomed to repeat it! I hear the people on this sit repeatedly call BUSH a "hitler" when BO is pulling all the same stunts Hitler did, and gets a pass.

5:01AM PDT on Jul 24, 2009

Lynette B – I suggest that you review the sources in Ann’s article. I also recommend the following links:

Time Article – Fragile X: Unraveling Autism's Secrets
http://www.time.com/time/magazine/article/0,9171,1818268,00.html

First Down Towards a Cure
www.youtube.com/watch?v=BgcQi0bbaJQ

Fragile X - Hitting the mark
www.youtube.com/watch?v=-6-J_YcVRi4

Roberta C – The statement is correct "Fragile X syndrome is the most common inherited cause of mental impairment.” The key word is “inherited” and the prevalence numbers will be changing drastically with what we’ve learned with the newborn screening research study.

Mary M – It’s estimated 1 in 130 women are carriers, in a 2001 study in Israel research indicated 1 in 113 women were carriers. There is a high probability that someone you know, even someone you love is a carrier. Could you be a carrier? Fragile X may silently lurk in a family for generations before it is identified. Fragile X is a spectrum condition, a child may have no symptoms or severe symptoms. The truly defective people in this world are those who are prejudice, those who do not practice tolerance. I once said you can live a shallow life just as easy as you can drown in shallow water; sadly, I’m still bothered when people prove it. There may be some merit behind your suggestion of eliminating these defective people if it took you out of the picture.

4:11PM PDT on Jul 22, 2009

Gee, Mary M. Hitler would have been proud of you.

12:24PM PDT on Jul 22, 2009

These DEFECTIVE people should NOT be breeding. Why would they even want to pass on THEIR defects? Tells me more than I want to know about the people who are willing to pass it on. We NEED PRE preg. testing to STOP the spread of defects such as this and many others as MOST will NEVER be anything, but a burden of society and take resources away from the healthy.

10:03AM PDT on Jul 22, 2009

I found this very interesting. I have two sons who walked later than most babies their age. One was in special ed because he learned slowly. Teachers thought he was adhd until they found out there were classes he could excel in.

9:10AM PDT on Jul 22, 2009

I didn't know about it. Thank you for the education.

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