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A Guide to Hereditary Spastic Paraplegia: The Essential Handbook for Patients, Families, Caregivers, and Healthcare Professionals - Softcover

Lee, Philippa

 
9798282241358: A Guide to Hereditary Spastic Paraplegia: The Essential Handbook for Patients, Families, Caregivers, and Healthcare Professionals

Synopsis

Hereditary Spastic Paraplegia (HSP) is a rare, progressive neurodegenerative disorder primarily characterized by spasticity and weakness in the lower limbs. Estimates suggest that HSP affects approximately 2 to 6 individuals per 100,000 people worldwide.

While HSP is a rare condition, its impact varies across different populations and genetic subtypes. Ongoing research and improved diagnostic methods are essential to understand the global prevalence better and to provide appropriate care and support for affected individuals. Getting a diagnosis is often a long, drawn-out procedure and fraught with difficulties.
From information on how to navigate an initial diagnosis to management, treatment, exercise, and daily life, this book aims to help both newly diagnosed and long-term HSP patients understand the condition and how to manage it with a view to living well.

A Guide to Hereditary Spastic Paraplegia aims to explain and demystify this little-known, rare neurological disease. Aimed primarily at those with HSP, their loved ones, and caregivers, it is a comprehensive guide to the condition, the diagnostic process, treatments, symptom management, and how to live well with HSP.

Whether yo are newly diagnosed, a long-term patient, or a clinician seeking deeper understanding, this book demystifies every step of the journey. Inside, you will find clear guidance on:

  • The diagnostic process and what to expect
  • Treatments and proactive symptom management
  • Practical strategies for daily living and independence
  • Navigating medical appointments with confidence

The author, who lives with HSP, wrote the book in collaboration with the UK Hereditary Spastic Paraplegia Support Group. All proceeds from the book will benefit the Group by continuing to support patients and families and by funding vital research.

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