Mumbai: 5-year-old who needs to be buried in sand to ease her pain

The family of Johanna, who has Arthrogryposis Multiplex Congenita, turns to unconventional sand therapy in a bid to alleviate her rare disorder, despite medical scepticism

Over the past few months, the daily routine of five-year-old Johanna and her parents has involved regular early morning visits to Juhu beach. Once there, they dig a hole in the sand, gently place Johanna inside, and carefully cover her with sand, leaving only her face exposed.

All of this is done with the hope that it helps Johanna, who suffers from Arthrogryposis Multiplex Congenita (AMC), lead a healthier life, even though the therapy is not backed by science. Her disorder is rare, causing multiple joints to be permanently bent or straightened at birth. “Doctors have said there is no cure for this. Physiotherapy can help,” said Olivia, Johanna’s mother. It has been a long and difficult five years for the family, with more than Rs 5 lakh spent on treatment so far. Johanna has been on a ventilator and in the ICU.

Olivia had to quit her job as a hairstylist to take care of her daughter. “She was covered under my husband’s insurance, so that was a relief,” she said. Physiotherapy has helped the family, but the child still cannot stand or sit. “But she has been swimming,” Olivia said, adding that the family plans to redo all the diagnoses and tests to revisit the treatment plan with the doctors.

So, where does sand therapy fit into this? Dr Anjali Gokarn, paediatrician, recalled that the method became popular about 30 to 40 years ago when polio was a widespread problem. “Families used to take their patients to walk on beach sand or bury their legs in it and do some exercises. They believed that overcoming the resistance beach sand offered would help build muscle strength, but this is not backed by evidence,” Dr Gokarn said.

While the family’s doctor was unavailable for comment, Gokarn noted that what works is a multidisciplinary approach, which provides a correct diagnosis and treatment. “This includes a neurologist, pediatric orthopaedics, physiotherapist, clinical geneticist, occupational therapist, orthopedist, and psychologist,” she said.

The causes for AMC can range from genetic factors to unknown origins. “If the muscles are weak when the child is in the womb, they can take any shape or the same shape as the uterus. The treatments are long and expensive but are also available at public hospitals like KEM. The important thing is for parents to keep in touch with their doctors and follow their advice,” Dr Gokarn said.

Rs 5L
Amount already spent on her treatment

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