Hyderabad: People whose face or facial parts have more proportion than others, and people with slightly different facial expressions usually attract unwanted attention towards themselves. The general public categorizes it as abnormal, but most of these people neither have any information about it nor do they want to know, until a close one or loved one they know suffers from this condition.
The genetic disorder Fragile X Syndrome is one of those conditions where a person develops an abnormal facial structure along with many other types of physical and mental diseases and intellectual disability. But since there is not much awareness or information about this condition in general, rarely any timely efforts are made for the treatment, training and other management of the patients. World Fragile X Awareness Day is observed on July 22 every year to spread education and awareness among the general public about Fragile X Syndrome and increase research opportunities for treatment in this field.
Fragile X syndrome is a genetic condition or hereditary syndrome that causes intellectual disability or autism. It is a disorder caused by a genetic mutation of the FMR1 gene (Fragile X Messenger Ribonucleoprotein 1) on the X chromosome. This gene creates a protein essential for normal brain development. This genetic disorder can be inherited from either of the parents.
The peculiar quality of this disease is that if it is inherited by the father, then it will only affect the daughter, but if it is inherited by the mother, then it can affect both genders. Its effects are usually seen in severe forms in male children, but its symptoms are mild in female children, proving that this disorder affects men more severely than women. It is also called the 'Martin-Bell Syndrome' or 'Escalante Syndrome'.
Apart from intellectual disability, many other symptoms are also witnessed in people suffering from Fragile X syndrome. In this disorder, the texture of the face, and some other body parts, of the victims is different from usual. For example, their face or ears may be relatively long, or they may have problems with their ears, feet, joints and palate, and abnormalities such as large testicles in males may be witnessed.
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Apart from this, many types of physical and mental problems can also be seen in the victims of this problem, such as vision problems, hernia, seizures, frequent ear or other types of infections, lack of balance in the body, hand tremors, difficulty in walking, attention deficit disorder, attention deficit hyperactivity disorder, autism, anxiety, sensory disorders and aggression etc. In women suffering from this disorder, problems with reproduction and osteoporosis can also occur.
Males with Fragile X syndrome have more difficulty in speaking, reading, walking, responding and understanding instructions than females suffering from this disorder. However, there is no cure for this genetic disorder yet. But if treatment, training and management are implied from early childhood, children can be helped to walk, talk, perform other tasks and learn other important skills.
World Fragile X Awareness Day is observed on July 22 every year with the aim of not just spreading awareness among the general public about this disorder, but also appreciating the families affected by this disorder and motivating people for research towards its treatment. One of the objectives of this event is to provide all possible help to people suffering from this condition and also to provide information about the facilities provided by government and private organizations for them. On this day, various programs, seminars, and social media campaigns like webinars and seminars are organized regarding this disorder and issues related to its patients.
World Fragile X Day was established by the US-based FRAXA Research Foundation. Officially launched in 1994, the organization has invested more than $32 million in more than 600 scientific grants in 19 countries on this disorder. In fact, in the year 2000, the US Senate passed a resolution to observe July 22 as National Fragile X Awareness Day.
From the year 2021, this event was observed globally as "World Fragile X Awareness Day". Later, taking a step further in this direction, it was also decided to observe the month of July as 'Fragile X Awareness Month'. Since then, FRAXA Research Foundation and partner organizations observe July 22 as World Fragile X Awareness Day and July as Fragile X Awareness Month globally.
