Country’s first FragileX clinic inaugurated in the city last week
Last week, the country got its first FragileX clinic at Mumbai. This is a joint effort by Ummeed child development centre and Fragilex society of India to help children and families of children who are affected by Fragile X Syndrome (FXS), an inherited condition that affects the intellectual, behavioural and social development of a child.
This once-in-two-months clinic, which will be run by Ummeed in its premises at Lower Parel, will offer assessments, provide information on aspects of Fragilex, monitor progress, provide medical consultation, genetic counselling, services like occupational therapy, speech and language therapy, behaviour therapy and facilitate parent support group.
This seems to be a big movement in the area of child development disability as the knowledge and awareness about FXS and such other syndromes is not much in our country.
The ADC caught up with the people who have taken great efforts for this clinic to come up. Shalini Kedia who is the chairperson of Fragilex society of India, Dr. Vibha Krishnamurthy, Founder and Medical Director of Ummeed and Veena Naren, a parent, tell us how important this clinic is for them and for the families of children with FXS.
The need for an information centre: Fragilex society of India
Shalini Kedia who is the chairperson of Fragilex society of India, in 2003, felt the need for forming a society that helps children with FXS and their families because of a personal experience.
“My personal experience made me realise that there is a need for a society like Fragilex society of India, to help people who are having issues with their children,” said Kedia.
Since then, around seventy families from across the country are a part of the Fragilex society of India, out of which 40 would be from Mumbai. Fragilex society of India creates awareness about this condition, conducts seminars and conferences and also networks with doctors and NGOs for this cause.
Amongst the several goals that this society has, opening an FXS clinic was one of them and on Friday that was achieved.
The force that will take this effort forward: Ummeed child development centre
“We were recently pushed into thinking about children with unique needs and whose needs are unmet. This is because of a strong pressure from parents that we thought about this issue and have ahead to help them out. At Ummeed, we have all the infrastructure and expertise to help such children and are all set to out our best foot forward for them,” said Dr. Vibha Krishnamurthy, Founder and Medical Director of Ummeed.
Genetic sub speciality, meeting unmet needs, building awareness and cutting across all sections and socio economic strata of the society is what Ummeed wants to do for this cause.
“There are cases of FXS but they aren’t being picked. Doctors need to have an increased index of suspicion. There needs to be an increased awareness about FXS,” added Dr. Krishnamurthy
The motherly touch: Veena Naren
Veena Naren a 42-year-old mother of a thirteen year old boy who suffers from FXS has only one agenda in mind as being a part of this project. No other family should suffer the way she did.
Telling us her story Veena said, “We realised that some thing was wrong with my child when at the age of two he wasn’t speaking the way a two year old should. So we took him to a speech therapist. With passing years we noticed that he isn’t achieving his milestones properly. It was at the age of seven when we faced a lot of difficulties. He became very aggressive and used to hit me everyday as he wasn’t able to cope at the regular school. So we took him to several psychiatrists. Each gave a new diagnosis. We also put him on medication.”
Then in 2010 Veena got a breakthrough.
“In 2010, my husband read an article on FXS and he realised that the symptoms and characteristics mentioned there are typically our child’s. We read more on FXS and were convinced that our child is suffering from FXS,” said Veena.
The next step these parents took was get in touch with the Fragilex society of India where they were guided about how to do the needful for their child. And from there on, life has changed for the parents.
“Early intervention and right treatment is the key. Start therapies the minute you feel that something is wrong with your child. It helps. Be alert, watch out for symptoms and do the needful at the earliest,” said Veena.
For Veena, the FragileX clinic which will give all the required support right from medical needs pf the child and the family to giving moral support and counselling under one roof is the need of the hour.
“I had to run around places for help and treatment. I don’t want anybody else to suffer the way I did,” said Veena.
To take an appointment at the FragileX clinic call Ummeed at 65528310/65564054 and ask for the FragileX clinic.
What is Fragile X Syndrome (FXS)?
Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene. FXS is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities sometimes referred to as mental retardation. FXS is the most common known cause of autism or autistic-like behaviours. Symptoms also can include characteristic physical and behavioural features and delays in speech and language development.
Characteristics of FXS:
- Attention problems
- Hand flapping
- Delayed development
- Long, narrow face
- Delayed speech
- Prominent ears and forehead
- Poor eye contact
- Large testicles
- The physical features may not develop until puberty and that some individuals may not exhibit these characteristics.