Fragile X Society India
Welcome to Fragile X Society India, a channel dedicated to one of the world’s most under-recognised genetic conditions. Fragile X doesn’t just affect learning and behaviour in children — it is also the leading inherited cause of autism, and the Fragile X premutation can affect women’s fertility, hormonal health, and risk of early menopause.
Here, we break down complex genetics into simple conversations, share real family journeys, and provide resources for early identification and better outcomes.
We talk a lot about why every child with Autism and any woman opting for IVF or reproduction therapies should be screened for Fragile X. A simple blood test holds a lot of answers.
Whether you’re a parent, a woman seeking answers about infertility, a doctor, or someone curious to learn — you’re not alone.
Subscribe to stay informed and help spread awareness.
Fragile X Society India
Can We Stop Therapy? Addressing this Toughest Question!
If your child has started talking, you have every right to feel a massive sense of relief and pride!
But often, parents ask: "Do we still need speech therapy?"
The short answer is: NO!
Talking is a beautiful beginning, but it is NOT the end of the therapeutic journey.
It is always speech and language therapy, so while you celebrate the speech let’s continue working on the language.
Communication Development Needs Ongoing Support
1. Moving Beyond Words:
The images remind us that Speech Therapy is about communication, not just words. Simple talking is a first step. True communication involves complex skills that allow your child to thrive in the world. We need to celebrate the words and strengthen the conversations to ensure meaningful connections.
2. The Building Blocks of Interaction:
Your child needs help with a spectrum of skills that extend far beyond saying basic words.
3. The Link to Lifelong Success:
progress continues through the school years, don’t stop too early! Strong communication skills are the foundation for learning, reading comprehension, and maintaining peer relationships.
ONGOING THERAPY = STRONGER FRIENDSHIPS + BETTER ACADEMICS.
4. Reducing Stress and Anxiety:
For children who struggle with communication, every interaction can be a source of stress. Therapy helps reduce frustration & anxiety during communication. It gives your child the tools to express themselves clearly, leading to less emotional distress and fewer behavioral challenges.
The Next Step? Continuing the Journey. 💖
Deciding to continue therapy is an investment in your child's future well-being and success. It ensures that those first words grow into effective, joyful, and confident communication that lasts a lifetime!
Continue Therapy!
Keep empowering your child to be the best communicator they can be.
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[ Fragile X Syndrome, Autism Awareness, Genetic Testing, FMR1, Gene, Developmental Delay, Early Diagnosis, Special Needs Parenting, Genetic Condition, Inherited Disability, Family Support, Intervention, Family Planning, Speech Therapy, Child Development, Fragile X Families, Support System, Parenting, Fragile X India, speech delay, therapy continues, language therapy ]
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4 weeks ago | [YT] | 0
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Fragile X Society India
Unlocking the Missing Piece in the Autism Puzzle. 🧩
For many families, an Autism diagnosis is just the beginning—it’s the crucial clue that can lead to understanding Fragile X.
Did you know that Fragile X Syndrome is the most common known single-gene cause of Autism?
For generations, families often see speech delays, anxiety, or learning differences run in the family, unaware of the underlying connection.
Knowing the genetic "why" behind these challenges can dramatically improve the prognosis of the affected child. It serves as a guideline for the extended family- siblings, cousins, uncles, aunts, nieces, nephews and many more on the tree.
Why is testing for Fragile X so important?
🔸The affected child gets treatment for Fragile X rather than Autism, and yes there is a difference which makes a huge impact.
🔸It brings clarity to the entire extended family.
🔸It informs future decisions, including future pregnancies.
🔸Understanding brings direction, and direction brings hope.
If Autism and developmental delays exist in your family, it’s time to talk to your doctor about the FMR1 DNA test.
Taking this step can provide the definitive answers needed for better support and quality of life.
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1 month ago | [YT] | 0
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Fragile X Society India
Yes, it can be connected!
We explore the common link between Fragile X Syndrome and eye muscle coordination differences, which can result in a squint and vision not working smoothly together.
Besides strabismus, children with FXS often struggle with accommodative insufficiency-the eye's difficulty in changing focus quickly between near and far objects. These vision issues can profoundly impact a child's reading, writing, and focus, sometimes even being mistaken for behavioral problems (e.g., avoiding eye contact because the eyes are struggling to stay focused).
The good news is that squint is treatable!
But more importantly, if your child presents with a squint or speech, sensory and attention issues, this information suggests a need to ask your doctor about Fragile X testing.
Treating Fragile X Syndrome, especially when visual issues are involved, requires a multidisciplinary approach. Families should seek collaboration between a geneticist, a pediatrician, a developmental or behavioral psychologist, a speech-language therapist, and an occupational therapist. This team-based care ensures that the visual intervention works in concert with therapies addressing motor skills, sensory regulation, and communication deficits for the best outcome.
Early diagnosis is key to unlocking specialized support, leading to better learning and more confidence at school.
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[Fragile X, Squint, Eyes, Vision, Sensory Issues, Speech and Attention, Testing, Genetics, Fragile X India, connective tissue problems, lazy eye, eye patching, reading problems, eye contact, Fragile X Syndrome, Rare disease]
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1 month ago | [YT] | 0
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Fragile X Society India
40% of boys who have Fragile X Syndrome may experience seizures.
It's vital for families and caregivers of individuals with Fragile X Syndrome to be aware of the potential for co-occurring seizures. This common, yet often under-discussed, neurological complication requires careful and immediate attention.
Understanding and addressing these seizures begins with a clear diagnosis, which is often facilitated by an EEG test. This gives the physician an essential, detailed picture of the brain's electrical activity. As a parent or caretaker, your role in this process is invaluable; maintaining a detailed, accurate record of every episode is incredibly helpful to the clinical team in tailoring the most effective treatment plan.
The good news is that these episodes can be effectively managed. Medications will be prescribed to help keep the seizures under control, leading to a better quality of life. For this management to be successful, regular visits with the physician are absolutely imperative to monitor progress and adjust treatment as needed.
It is of the utmost importance that you do not stop or alter the prescribed medicine dosage without the explicit advice of the doctor. Treatment adherence is key to preventing relapse. In most clinical scenarios, the anti-seizure medications will be continued until the individual has been episode-free for a period of two years, marking a significant milestone in their care journey.
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1 month ago | [YT] | 1
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Fragile X Society India
This is our very own HERO
7 months ago | [YT] | 0
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Fragile X Society India
Fragile X Syndrome Explained 🧬
Discover the emotional and social impact and the importance of early intervention.
Explore the causes, symptoms, diagnosis, and management of Fragile X Syndrome.
Understand inheritance patterns and the crucial role of family support.
Swipe through to increase your awareness.
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[ Fragile X, Autism, ASD, Mental Health, Genetics, Inherited Condition, Fragile X India
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7 months ago | [YT] | 1
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