Go Purple for Rett: Rett Syndrome Awareness Month

• Written by Mudit Handa

  Reviewed by Akhil Pillai

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Each year, millions of children are born with a developmental disability.

A 2023 study by the U.S. National Institutes of Health (NIH) estimated that approximately 1 in 16 children worldwide are affected by developmental disabilities, many of which are pretty rare. This month is dedicated to one such rare developmental disability: Rett Syndrome.

Rett Syndrome Awareness Month, observed in October, is a crucial annual event dedicated to shedding light on this rare and severe neurological disorder that primarily affects girls. Its multifaceted significance aims to improve understanding, support, and research for this challenging condition.

Rett Syndrome: Understanding its Impact

Rett syndrome is an uncommon but severe neurological and developmental disorder. It primarily affects girls, though it can rarely occur in boys. Symptoms of Rett syndrome usually appear between 6 and 18 months of age. The condition leads to a progressive decline in motor skills and language due to its impact on brain development.

How Does Rett Syndrome Affect the Functioning of Children’s Bodies?

Children suffering from Rett syndrome show the following signs and symptoms that affect normal body functioning:

• Developmental Regression: A loss of previously acquired purposeful hand skills and spoken language.
• Repetitive Hand Movements: These include characteristic hand wringing, squeezing, clapping, or mouthing of hands.
• Gait Disturbances: These include difficulty walking, an unsteady or wide-based gait, and apraxia (difficulty with motor planning).
• Communication Difficulties: Limited or no verbal communication and problems with social interaction.
• Breathing Irregularities: Periods of hyperventilation and breath-holding while awake.
• Growth Retardation: Slower head growth (microcephaly) and sometimes overall growth.
• Seizures: Many individuals with Rett syndrome experience seizures.
• Scoliosis: Curvature of the spine is typical.
• Sleep Disturbances: Irregular sleep patterns.
• Gastrointestinal Issues: Including constipation and reflux.

Rett syndrome is caused due to a mutation in the MECP2 gene. The MECP2 gene is crucial for normal brain development. A mutation in this gene, located on the X chromosome, is nearly always the cause of Rett syndrome. This disruption of the gene's function leads to the disorder's characteristic symptoms.

Key Objectives Behind Rett Syndrome Awareness Month

The primary goal of observing this awareness month is to share stories, promote understanding, and gather support for ongoing progress in Rett syndrome research and care. The key objectives of observing Rett Syndrome Awareness Month include:

• Increasing Public Understanding: Many people are unfamiliar with Rett syndrome, often mistaking its symptoms for other conditions. Awareness Month provides a dedicated period to educate the public about its unique characteristics, including its early onset, regression of acquired skills, and subsequent development of stereotypical hand movements, gait abnormalities, and communication difficulties.
• Reducing Stigma: By openly discussing Rett syndrome, Awareness Month helps to normalise conversations around neurological disorders and reduce any associated stigma. This encourages greater acceptance and understanding within society, creating a more inclusive environment for individuals with Rett syndrome.
• Promoting Early Diagnosis: While Rett syndrome is typically diagnosed based on clinical criteria, increased awareness among parents, caregivers, and healthcare professionals can lead to earlier recognition of symptoms. Early diagnosis is vital for initiating appropriate therapies and interventions to improve quality of life and support developmental progress.
• Highlighting the Need for Research: Rett syndrome is caused by a MECP2 mutation. Ongoing research into its mechanisms and potential treatments is crucial. Awareness Month helps to attract attention to the need for continued funding and support for scientific research, which aims to develop new therapies, improve existing treatments, and ultimately find a cure.
• Supporting Patients and Families: Living with Rett syndrome presents significant challenges for affected individuals and their families. Awareness Month fosters community by connecting families, offering resources, and providing a platform for shared experiences. This support can alleviate feelings of isolation and empower families to navigate the complexities of the disorder.
• Advocacy for Better Care and Resources: During this month, advocacy groups and organisations can campaign for improved access to specialised care, therapies, and educational resources for individuals with Rett syndrome. This includes advocating for policies that support research, provide financial assistance, and enhance the overall quality of life for those affected.

What is the Rett Syndrome Awareness Month 2025 Theme?

The theme for Rett Syndrome Awareness Month for the past two years has been the same:

“Purple Out for Rett!” 

The Rett Syndrome Awareness Month 2025

Rett Syndrome Awareness Month emphasises to go purple during the October month, especially from 17th to 19th October. As an active volunteer, you must wear purple colour while spreading Rett syndrome awareness among your local community. Besides, you must use purple as the theme colour while spreading Rett syndrome awareness online.

Apart from imparting awareness regarding the growth retarding disorders,  it is imperative to know the importance of adequate health coverage in managing the regular healthcare costs.

Ease the Burden of Healthcare Cost With Affordable Health Insurance 

Rett syndrome, like other complex neurological diseases, often necessitates expensive medical procedures. These costs can significantly deplete savings, highlighting the importance of having an affordable health insurance plan. Such a plan should offer comprehensive coverage for medical expenses and essential hospitalisation needs.

However, before purchasing a health insurance plan, you must carefully check whether it covers diseases occurring due to certain genetic conditions.

Disclaimer: It is essential to verify the policy details and coverage with the official policy documents. Also, kindly consult a professional medical expert to verify the details of your health concerns.