Life took a turn for the worse for a 16-year-old girl from Mysuru, who has developed severe forward bending of the neck and trunk over the last one year. Unable to sit, stand or walk, she finds relief only upon lying down. She was compelled to discontinue education and spends most of her time in bed.
Admitted to NIMHANS, the girl has been diagnosed with idiopathic dystonia, a movement disorder. With an expensive Deep Brain Stimulation (DBS) surgery as the only option, her family is now seeking support to provide her with a better future.
To raise awareness about movement disorders, November 29 is observed as World Movement Disorders Day.
Pramod Kumar Pal, Professor of Neurology and Head of Movement Disorders Subspeciality in the Department of Neurology at NIMHANS, told The Hindu that DBS is a well-established and appropriate treatment option in patients where symptomatic treatment with medication is not helpful.
“However, it is an expensive procedure, costing between ₹10 lakh and ₹ 15 lakh even in a government-run institution, which many cannot afford. DBS can potentially improve the quality of life; however, facilitating this is a major challenge. This case is one among many who are in a similar situation and seeking community support to access appropriate treatment,” Dr Pal said.
Movement disorders
Movement disorders are neurological conditions that affect bodily motor control, invariably leading to significant disruptions in an individual’s life. These disorders are often degenerative in origin with no definitive cause. However, they can also be genetically mediated or secondary to various other causes. These disorders typically manifest as either slowness of movemen,t as observed in Parkinson’s disease, or an excess of movements in disorders with tremor, ataxia, chorea, dystonia and tics.
Dr. Pal explained that common modalities in symptomatic management are medications, botulinum toxin injections and surgical options such as DBS surgery or lesioning. “The approach and outcomes vary between disorders and often need to be tailored based on the patient and their requirements. Awareness about movement disorders is imperative not only to aid in early identification and intervention but also to educate in order to destigmatise and enable acceptance and inclusivity,” he said.
While movement disorders are often associated with the elderly, they can affect any age group. While these disorders inevitably affect almost all aspects of the patient’s life and their caregivers, several therapeutic modalities that may improve the quality of life may not be accessible or affordable. In a majority of cases, financial limitations are often the predominant challenge, Dr Pal said.
Around 60 new cases a week at NIMHANS
Vikram V. Holla, Associate Professor, Department of Neurology at NIMHANS, said while there is no data on the prevalence of dystonia in the Indian population, around 60 new cases of movement disorders are seen at NIMHANS every week.
“Of around 3,000 new cases that we get annually, nearly 600 are of dystonia where the patient will have abnormal body posturing (such as cervical dystonia if it affects neck, writer’s cramp if abnormal posturing happens during writing, generalised dystonia if whole body is affected). Over half of these patients are children,” Dr Holla said.
“Around 20-30 patients of pediatric dystonia a year who may otherwise benefit from DBS with meaningful improvement in quality of life cannot undergo the surgery due to financial limitations. So far, the financial support for these patients are in the form of government relief funds which only provide partial funding,” he explained.
For any further information the doctors can be contacted at palpramod@hotmail.com ; vholla@nimhans.ac.in
EOM/
Published – November 29, 2024 06:10 am IST
