Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD.
This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not.
Both honest and positive, the author stresses the importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour.
Sandy Sulaiman has been a journalist for 20 years, with articles published in most UK national newspapers, as well as specialist publications and women's magazines. She was diagnosed with Huntington's disease seven years ago. Sandy lives near Banbury, Oxfordshire, UK.
Thank-yous. Introduction: 'The Most Cruel Disease Known to Man'. 1. The Eye of the Storm: Sandy's Story. 2. The Lucky One? The Sister's Story. 3. Lost and Found: The Older Son's Story. 4. 'Is Everyone All Right?' The Younger Son's Story. 5. Eyes Wide Open: The Daughter-in-law's Story. 6.Mopping the Ceiling: The Husband's Story. 7. A Cruel Inheritance: Brian's Story. 8. Tips for Living with Huntington's Disease. Appendix: Useful Resources. References.