About Fatal Familial Insomnia
Key Highlights
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Provides a centralized, coordinated care approach through an Internal Medicine specialist.Focuses on comprehensive symptom management to improve patient comfort and quality of life.Involves a multidisciplinary team including neurologists, psychiatrists, and palliative care experts.Includes essential genetic counseling and testing services for at-risk family members.Offers continuous support and care planning for both the patient and their family throughout the disease course.
Who is this surgery for?
- Confirmed diagnosis of Fatal Familial Insomnia via genetic testing for the PRNP gene mutation.
- Progressive, severe insomnia unresponsive to conventional sleep therapies.
- Development of autonomic dysfunction (e.g., hypertension, hyperhidrosis, tachycardia).
- Onset of motor and cognitive symptoms, including ataxia, dysarthria, and memory deficits.
- Family history of FFI with the patient presenting suggestive clinical symptoms.
How to prepare
- Comprehensive neurological and medical evaluation to confirm diagnosis and assess baseline function.
- Genetic counseling session for the patient and family to discuss implications of testing and diagnosis.
- Discontinuation, under medical guidance, of any medications that may interfere with symptom assessment.
- Establishment of a care plan and goals with the patient, family, and multidisciplinary team.
- Arrangement of home care or hospice services for anticipated future needs.
Risks & possible complications
- Progression of the disease is inevitable, with no available curative treatment.
- High risk of severe complications including complete insomnia, profound dementia, and motor failure.
- Psychological distress for the patient and family due to the disease's nature and prognosis.
- Side effects from medications used for symptom control (e.g., sedation, confusion).
- Emotional and logistical burdens associated with end-of-life care planning.
Recovery & hospital stay
- Recovery in the traditional sense is not possible; care is focused on palliative management.
- Continuous symptom management through adjusted medications for sleep, agitation, and autonomic issues.
- Regular follow-ups with the internist and neurology team to monitor progression and adjust care.
- Supportive care including physical therapy for mobility and occupational therapy for daily activities as long as feasible.
- Integration of hospice or palliative care services to provide comfort and support in the final stages, typically at home or in a dedicated facility.
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Typical hospital stay: Variable, often 0 days for routine management; short stays may be required for acute symptom crises.
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Expected recovery time: Not applicable; this is a progressive, terminal condition managed with lifelong palliative care.
Frequently Asked Questions
If you are considering fatal familial insomnia in India, these questions and answers can help you make a confident, informed decision.
Popular choices for fatal familial insomnia in India include Manipal Hospital Ghaziabad, Manipal Hospital Malleshwaram, Manipal Hospital EM Bypass, Manipal Hospital Kanakapura Road, KMC Hospital Mangalore, known for experienced specialists and advanced surgical infrastructure.
Look at the doctor’s years of experience, hospital association, patient reviews, and how often they perform fatal familial insomnia. MediFyr helps you compare internal medicine specialists and book consultations online.
The overall cost depends on hospital category, surgeon’s experience, room type, implant or device used (if any), length of stay, tests, and post-operative care. Our team can help you get cost estimates from multiple hospitals before you decide.
Procedure cost in other countries
Here is an overview of how the estimated cost, hospital stay, and recovery time for fatal familial insomnia compare across other countries where we have data.
| Country | Estimated cost range | Typical stay | Recovery time | View details |
|---|---|---|---|---|
| India | INR 50 Thousand – 200 Thousand | Variable, often 0 days for routine management; short stays may be required for acute symptom crises. | ~ Not applicable; this is a progressive, terminal condition managed with lifelong palliative care. | Know More |
| Turkey | TRY 175 Thousand – 700 Thousand | Variable, often 0 days for routine management; short stays may be required for acute symptom crises. | ~ Not applicable; this is a progressive, terminal condition managed with lifelong palliative care. | Know More |
Top hospitals for Fatal Familial Insomnia in India
These partner hospitals in India have dedicated internal medicine teams and experience managing patients undergoing fatal familial insomnia.
Sai Sharma, 48, is a disciplined...
Sai Sharma, 48, is a disciplined software architect from Bangalore with two teenage children. For six months, he experienced relentless insomnia that no sleep aid could touch, accompanied by panic attacks and a disturbing inability to sweat. His once-sharp focus at work dissolved into confusion. His neurologist, after ruling out common causes and learning Sai's paternal aunt died of a mysterious neurological illness, recommended genetic testing for Fatal Familial Insomnia (FFI). The blood draw was simple, but the four-week wait for results was agonizing, filled with dread and desperate hope for any other explanation. The test confirmed the FFI mutation. The diagnosis was a devastating blow, shattering his future plans. However, knowing the cause ended the terrifying diagnostic odyssey. With palliative care support, Sai focused on creating memory books for his children and maximizing quality time with his family, finding a painful but profound clarity in his remaining time.
Internal Medicine Specialists for Fatal Familial Insomnia
Explore experienced internal medicine specialists who regularly perform fatal familial insomnia and provide pre- and post-operative care in India.
- 41 Years Experience
- Internal Medicine Specialist
Manipal Hospital Yeshwanthpur, Bangalore
- 11 Years Experience
- Internal Medicine Specialist
- 8 Years Experience
- Internal Medicine Specialist
- 8 Years Experience
- Internal Medicine Specialist
- 8 Years Experience
- Internal Medicine Specialist
- 22 Years Experience
- Internal Medicine Specialist
Manipal Hospital Whitefield, Bangalore
- 16 Years Experience
- Internal Medicine Specialist
Manipal Hospital Whitefield, Bangalore
- 15 Years Experience
- Internal Medicine Specialist
Manipal Hospital Whitefield, Bangalore
- 32 Years Experience
- Internal Medicine Specialist
Manipal Hospital Old Airport Road, Bangalore
- 18 Years Experience
- Internal Medicine Specialist
Manipal Hospital Patiala, Patiala
- 14 Years Experience
- Internal Medicine Specialist
Manipal Hospital Patiala, Patiala
- 8 Years Experience
- Internal Medicine Specialist
Manipal Hospital Patiala, Patiala
- 13 Years Experience
- Internal Medicine Specialist
Manipal Hospital Vijayawada, vijayawada
- 9 Years Experience
- Internal Medicine Specialist
Manipal Hospital Vijayawada, vijayawada
- 43 Years Experience
- Internal Medicine Specialist
Manipal Hospital Malleshwaram, Bangalore
- 36 Years Experience
- Internal Medicine Specialist
Manipal Hospital Malleshwaram, Bangalore
- 23 Years Experience
- Internal Medicine Specialist
Manipal Hospital Malleshwaram, Bangalore
- 23 Years Experience
- Internal Medicine Specialist
Manipal Hospital Kharadi, Pune
- 21 Years Experience
- Internal Medicine Specialist
Manipal Hospital Kharadi, Pune
- 15 Years Experience
- Internal Medicine Specialist
Manipal Hospital Jayanagar, Bangalore