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1st Trimester
marisha1021
member
fragile x...
marisha1021
member
I got genetic testing (blood drawn) a few weeks ago (bc ill be 35 a few days after i deliver, so it was recommended.)
My genetics counselor called, and I am a carrier for Fragile X. I have never heard of this before, but I am starting to panic bc the more I read, the more information starts to scare me.
I am meeting her later today (after my 11 week sono!) to talk more about it.
Anyone been through anything similar??
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Re: fragile x...
I was tested for fragile X because I have a special needs son. What this means is that if you have a baby girl, she will carry it on to her baby, the gene usually worsens through generations. If you have a son it is likely your child will be born with a special need. HOWEVER this doesn't mean it is a guarantee. Your child can be born perfectly fine. Males have fragile X more severe than females. My son is MR, has Autism and a speech impairment, but I tested NEGATIVE for fragile X. So therefore, this can happen to anyone, whether you are positive or negative.
It is best not to resort to the internet for help on this matter, fragile X varies in severity based on individual families. Some are struck hard, others see very little symptoms. Which may be the case in your family because no one in your family even mentioned it to you, they probably had no idea. What happened in your family line a female carried it, most likely your grandmother, since you are female, your mother passed it on to you. Does that makes sense? The genetic couselor will explain this to you much better.. But I hope that helped. GL to you.
Fragile X is the most common form of mental retardation and can range anywhere frOm hardly any symptoms to very severe. Girls are generally carriers but don't have full on symptoms because it affects the X chromosome which they only have 1 of. If the gene is mutated, that is when you see the more sever cases in boys. Now don't panic just yet, just because you are a carrier does not mean your child will be affected.
Basically everyone on my moms side of the family is a carrier or affected by. Fragile X. We did not find this out until I was about 15 when fragile X became more main stream.
As far back as we can trace it, My grandfather and his brother were carriers.
My grandfather had 1 boy and 2 girls. The boy, my uncle had the mutated gene. My mom and aunt are both carriers. My grandfathers brother had 2 boys and 2 girls, the boys are fine, both girls are carriers.
My aunt had a boy and a girl, the boy had the mutated gene and the girl is a carrier. They are my cousins.
My mom only had me and despite her being a carrier, she did not pass it on the me! I have 2 perfect unaffected little boys.
Long story short, don't fret, just because you are a carrier does not mean your baby will be affected. And if he or she is, god will give you the strength to handle it. I watched my aunt care for and love her "special" son for 21 years. I wish the best for you and I hope you receive some good news! Keep us posted!
Fragile X - Basics
A mother has a 50/50 chance of passing it on to her sons/daughters with each pregnancy.
A father will NOT pass it on to his sons, this is an X-linked disorder and is carried on the X chromosome, A father will pass it on to all of his daughters.
Understanding this - you might find the Fragile X Page at www.ygyh.org
I agree there is a lot of misinformation on the web reference fragile X, your most reliable sources are:
www.fragileX.org
www.fraxa.org
This is a great article, from Time Magazine, in layman terms to help one understand fragile X and it's associated conditions
https://community.thebump.com/cs/ks/forums/thread/64681664.aspx?MsdVisit=1
FRAXA has a list serve with well over 600 members if you'd like to connect with others. There is also a very active FB group, The Fragile X Files, over 600 members. And if you like please feel free to connect with me directly.
(((hugs)))
thank you all.
according to my genetics cslr.. they are still finding out quite a bit about the condition, and i have a 16% chance of passing it on (and 84% of NOT). Since there have never been any signs in my family tree of fragile x, she also said that there is a possibility that we carry the gene in around the same repeats, over the years... they can't be quite sure. it's up to me if i want a CV or Amnio.. and I am not sure. I keep repeating 84%, 84%, 84%!