Patient Comments: Fragile X Syndrome - Experience

Please describe your experience with fragile x syndrome.

Comment from: 7-12 Male (Caregiver) Published: January 15

To the person who said the pediatrician would not order fragile x test because the child does not have the physical characteristics: My son, who is 10, only had the protruding ears and he was diagnosed with fragile x yesterday. Keep trying!

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Comment from: 19-24 Female (Caregiver) Published: January 30

I'm a mid 40's female with the permutation of Fragile X. I found out I was a carrier when, my now 20 year old, son was diagnosed with Fragile X at about 6 months. I went thru menopause at about 30 and finally figured out why it happened so early after reading this article. My son is healthy. He does not speak and still has bowel movements in his pants sometimes. He is mod/severely mentally retarded. He became extremely violent after puberty and I placed him in a group home at 16. He has been on several meds for his behavior and is doing okay (not great) within a very structured group home life.

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Comment from: Melissa + 4, 45-54 Female (Caregiver) Published: February 03

I am the sister of three brothers and one sister who are all affected by fragile X. My three brothers are the lucky ones, they all live in separate group homes and are doing well. My sister however, is not so lucky. She is not mentally handicapped enough to qualify for MRDD services from the county she lives in but she is not high functioning enough to be able to live on her own without everyday monitoring. Getting her settled into a life since my parents passed away has been really hard. All four of my siblings exhibit very different phenotypes of the fragile x syndrome.

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Comment from: jacksns, 55-64 Female (Caregiver) Published: December 14

My mother had fragile-x with ataxia. She lived to age 90, but without a good quality of life. Her thought process was always circular, and it was often hard to understand what she meant. She was mis-diagnosed with Alzheimer's and Parkinson's. We couldn't understand why her medication made no difference - but now we know. My brother has Fragile-x with progressive ataxia and his brain is shrinking. He is 63. I am female, and have always had learning disabilities. Math was difficult, and I only remembered what I wrote down - reading didn't imprint the information in my mind. I'm getting tested soon.

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Comment from: JoLesa, 3-6 Male (Caregiver) Published: August 04

I am a 27 year old mother of two, one boy and one girl who are both affected by Fragile-X. They are the most precious things god has ever granted me. I think that the hardest part of the diagnosis isn't so much a "why me" but the guilt I have never stopped feeling for not knowing before I had them that I was carrying the gene. They are the first and only ones in my family affected by this. I just can't get past the worry of what their life may turn out to be. Mom's always feel bad when a child gets hurt and she is helpless at that moment, but I feel that way everyday when I watch them attempt things that seem so hard, and I can't help. It's just different because that feeling lasts all day every day. My heart breaks for them when I see them around peers who do treat them different. Defiantly one of the hardest things I have been through, but also amazing to watch them learn and do something new or better everyday.

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Comment from: curefx, 13-18 (Caregiver) Published: September 24

Our son is 17 years old with Fragile X Syndrome. He is moderately cognitively impaired. He can also be very violent. He has lived in a group home since the age of 12 as I was unable to control his behaviors. I had to place him for the sake of my own safety and the safety of my daughter. I visit him daily. He's doing alright but it's not the life I ever imagined for my child.

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Comment from: supamook, 7-12 Male (Caregiver) Published: August 27

Hi, I am a 41 year old mother of 5. I have two girls and 3 boys. I never knew about FX until my 4th child was born. He has a mild case of FX. He didn't walk until he was 2 1/2 years old, and was fully potty trained by 7 1/2. He now goes on his own and does a lot of things on his own. He is going to be 11 years old. He likes doing laundry and playing in the kitchen sink. He can dress himself, feed himself and usually clean up when prompted to. He has been nothing but a huge blessing and I understand what every mother goes through with a special needs child. I am blessed that he is not any worse. He does get emotional at times but never angry enough to hurt himself or someone else. Everybody at school just loves him to pieces. I already have had my other children tested and they are not carriers of FX. I did get pregnant with my 5th child unexpectedly, but thank God she was not effected by FX.

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Patient Comments

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Fragile X Syndrome - Symptoms Question: What symptoms do you or your loved one experience from fragile X syndrome? How do you cope?
Fragile X Syndrome - Carrier Question: Did you ever undergo genetic testing to see if you are a fragile X syndrome carrier?
Fragile X Syndrome - Educational Options Question: Do you have a child with Fragile X? Please discuss the educational opportunities in which your child has participated.
Fragile X Syndrome - Social and Emotional Issues Question: How does your child with Fragile X deal with social situations? Please share how you cope with your child's emotional issues.

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