Understanding Huntington's Disease: Prognosis and Next Steps

Prognosis of Huntington's Disease

Once physical symptoms of Huntington's disease begin to appear, neurological changes can be detected. The typical prognosis for Huntington's disease ranges from 15 to 25 years, characterised by a gradual decline in both physical and cognitive functions until death.

It's important to note that many neurological changes occur long before physical symptoms manifest. These early changes can lead to alterations in behaviour and thinking, potentially before a formal diagnosis is made.

Next Steps After Diagnosis

Upon receiving a diagnosis of Huntington's disease, several steps should be taken:

Referral to the Huntington's Disease Association

A referral to the Huntington's Disease Association, particularly to a local supervisor or specialist advisor, is essential. They can offer crucial advice and support to both the patient and their family, and coordinate with relevant professionals.

Specialist Clinic and Research

It is advisable to be referred to a specialist clinic for Huntington's disease. These clinics provide expert care and can also offer opportunities to participate in ongoing research.

Planning for the Future

Given the slow progression of the disease, newly diagnosed individuals may choose to plan for the future, despite the uncertainty. Considerations may include:

• Lasting Power of Attorney: For health and financial matters.
• Making a Will: To ensure personal wishes are honoured.
• Future Care Decisions: Such as the possibility of tube feeding or other care options.

The Huntington's Disease Association specialist advisor can guide families through these decisions and provide valuable information on all available options.

Personal Experiences and Perspectives

People's reactions to their prognosis can vary:

• Positive Outlook: "When the doctor told me that most people live about 20 years with Huntington's, I felt that was okay. I'd had a good life until that point, and I intend to make the most of what I've got left."
• Living Day by Day: "I've watched my gran, my father, and my mother battle with Huntington's disease, striving to maintain their independence. I try not to think too much about the future and focus on taking each day as it comes. Who knows what the future will bring?"

Conclusion

Understanding the prognosis and taking proactive steps after a diagnosis of Huntington's disease can significantly impact quality of life. Seeking support from the Huntington's Disease Association and considering future planning are key components of managing the disease.