DipaliDipali’s case has followed the same classic pattern of the disease. The initial symptoms were acute pain in the legs and loss of vision. Dipali’s parents got her examined for her vision problem. No problem in vision was detected. She then reported of absentmindedness and started tripping when she walked. A CT scan was done in late 1998 which showed no significant CT evident abnormality.
In December 1998, one day she came from school without one chappal. When inquired she said she was not aware of it. Upon further checking her father saw, only lines in her note book. She then reported of total loss of vision. After this, it was noted that she had started tripping often.
Another CT scan was done in early 1999 which again did not reveal any abnormality. She was misdiagnosed for ‘Conversion Reaction Disorder of Eyes’. Later on, in mid 99, a MRI investigation and an EEG report confirmed the clinical possibility of SSPE.
The slow incubation period of the disease makes it difficult to be diagnosed at an earlier stage.
DipaliThe second phase of the disease, comprised a profound intellectual impairment with cortical blindness and frequent myoclonic jerks. Speech and hearing impairment was also reported.
She lost her sense of hunger, thirst and other biological needs, and became dependent on family members for all of them.
Initially, it was difficult for her parents to accept this disease. More so, because they themselves belonged to the medical profession. Later on, there was more acceptance, and when the case was reported in a local daily, there was a sympathy wave which gave the family immense social support to overcome this trauma.
Dipali with FamilyThe ‘Sinha Anxiety Scale’ revealed high anxiety in the parents despite having accepted that Dipali is now progressing rapidly towards death. The parents have now placed all their hopes on the younger sister. The family members have accepted Dipali’s condition as a quirk of fate. That a girl who was so normal till last year is now rapidly progressing towards death. The immense moral support they have now developed within the family and the social support as well, has been playing a major role in helping the family accept and overcome the traumatic end of an SSPE patient. The patient is currently in the final phase of the disease with loss of sense of biological needs, inability to relate to people, paucity of spontaneous movement, frequent myoclonus and blindness. She is rapidly losing weight, and has profound impairment in speech and hearing. Thus, a happy, innocent, normal child is transformed into an expressionless, unintelligent skeleton.
- Even after knowing the proper cause, prognosis is not good.
- The illness is undetectable, misleading and sometimes misdiagnosed.
- Impairment related to visual perception, motor co–ordination, maintaining body balance, and grave psychological deterioration are observed with regard to intelligence, emotional expressions, memorization and reasoning.
- It disturbs the family setup and emotionally traumatizes the entire family. The reason being the unavoidably slow death of a very young child.
On the basis of the present case study, the following suggestions and implications have been put forward.
- In order to create an awareness in society, as a preventive measure, we can arrange extensive and intensive programs with the help of the print media, radio, television, the Internet, posters, house to house campaigns, seminars, symposia, conferences etc., regarding the hazardous effects of simple diseases like measles which are related to the dysfunction of the central nervous system.
- Control of Subacute Sclerosing Pan Encephalitis, will need to be based on the knowledge of complex factors interacting to produce this defective measles infection.
- In order to obtain complete reporting, health care providers and public health personnel are encouraged to report all suspected cases to the registry.
I hereby take the opportunity to thank Dr. Jatin Shah (MD Psy.) Baroda, for having introduced me to the Dipali and her family.
Second, Dr. Ramesh Parekh, Dipali’s father for granting me the permission to take up her case for study.
Finally, I would sincerely thank Dr. Purandare, Professor in Psychology, M S University, Baroda, for her valuable guidance in this study.
Gauri Tembe MA (Psychology),
Presented as a poster at the Indian Science Congress held at Pune, from the 3rd to the 7th of January 2000 in the Psychology and Educational Sciences department.