Patient Comments: Fragile X Syndrome - Experience

Please describe your experience with fragile x syndrome.

Comment from: Edith, 55-64 Female (Caregiver) Published: September 20

This is fascinating! I had not heard of fragile x syndrome, but have an aunt who had 5 children, all with various degrees of mental retardation, the boys much more serious than her one girl. Two of the boys died very young. I am superior in intelligence, but have mitral valve prolapse, and had difficulty getting pregnant, with three miscarriages. My mother probably had early ovarian cessation, as I am an only child, and she never used birth control. I plan to be tested for the chromosome, as I have three daughters, two of whom have children, and two of their children (one each) seems to have some of the characteristics, physical, emotional and mental, listed in the description. It will be helpful for our family to understand this syndrome better.

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Comment from: Toni, 55-64 Female (Caregiver) Published: November 10

I have a 10-year-old son that has fragile x syndrome. My son is very loving. He understands signing, and he understands English and Spanish. He doesn't speak. He doesn't know how to read or write. He is the most loving kid I have ever worked or been with. I wish I knew how to help him more.

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Comment from: nancy t, 25-34 Male (Caregiver) Published: October 07

My son is 25 years old and has fragile x. He has been having a difficult time for the past year with his dad passing away. His behavior changes all the time and the doctor keeps changing his medicine but I dont know if that is the problem.

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Comment from: 13-18 Male (Caregiver) Published: February 08

My son of 16 continues to have a bowel movement on himself. He was diagnosed with fragile-x one year ago. He has an IQ of 58 but is very aware of the regular surrounding, such as grocery stores, our vehicles, our families home. We have lived in our home for 15 years, shopped at the same stores, went to the same school, and pretty much kept the same routine. As soon as I think he has stopped the BM's he gives me a BIG surprise. I lost my temper today. He did it at the grocery store.

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Comment from: alovingmom1985, 0-2 Female (Caregiver) Published: September 13

I am a 25 year old mother of 4; sadly my son passed 3 years ago from fragile x as he had a severe case that included a heart defect. I now have learned that my youngest daughter is also fragile x, and I am struggling with the fact that I did not know I could have been tested and prevented such a difficult life for her. Since her diagnoses I have done hours upon hours of research and feel so inspired by her relentless bravery. I believe that children with fragile x are god's gift to strong woman. I believe they will be our miracles and I couldn't imagine a day without my precious children, no matter how difficult it has been or will be, if they can remain as strong as they do then so can I.

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Comment from: rahul, 7-12 Male (Caregiver) Published: May 19

My son is very shy and loving. He shy's away from people and doesn't interact much. His language is not fully developed but is showing a lot of change with speech therapy, occupational therapy. Being patient with him helps his behavior. We praise him a lot to get his work done. We have done homeopathic treatment for a year. It did help him but there are lots of issues which needs to be worked on like his speech, attention deficit, social behavior.

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Patient Comments

Viewers share their comments

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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