Finding out you have a rare genetic disease such as familial amyloid polyneuropathy (FAP) can be unsettling, especially if you live alone or planning to do so. There are steps that you can take, however, to help maintain your independence.
Learn about your disease
The first step is to learn all you can about FAP. You will want to understand how the disease will affect your daily life, and how it is likely to progress.
Becoming educated about FAP is also important because the disease is rare, and you will probably encounter doctors and other health professionals who are unfamiliar with it. Learning as much as possible about your disease will help in making informed decisions about your care.
Plan your finances
As your disease progresses, symptoms such as shortness of breath, dizziness or fainting, gastrointestinal issues, problems with movement and sensation in the limbs, and potential vision loss can challenge your professional, as well your personal, life.
The increasing disability that comes with FAP’s progression may also make it difficult for you to take care of yourself, and you may require the assistance of a home healthcare professional.
It can be helpful to plan now for your future financial needs, and to consider speaking with a financial adviser.
Consider your location
You may want to consider living near family and friends who can help you in case of medical emergencies, or with daily self-care and household tasks that are becoming difficult.
It may also be helpful to live in a city or large town with adequate and reliable public transportation, allowing you to travel without having to drive.
Living near a large research hospital may also be appealing, as these centers tend to be more experienced in dealing with people with rare diseases like FAP, and may be sites for clinical trials testing experimental FAP treatments.
You may also want to choose a home that is, or could be, adapted to your needs as your disease progresses.
Because FAP is progressive, living with it can be stressful, especially if you are living alone. Sources of stress can include symptom discomfort, financial concerns, and feelings of isolation. It is important to manage your stress levels, however, as chronic stress can worsen neuropathic pain, and its sensations of numbness, tingling, and burning.
To reduce stress, try to continue with activities that you enjoy. A professional therapist can suggest approaches that help to relieve stress, and it also helps to keep in communication with friends, family, and your healthcare team.
Use community resources
Make sure to take advantage of government and community resources, such as transportation and housing for people with disabilities, which could help preserve your independence.
Joining a support community also helps to keep you informed and motivated. There are several support groups and patient organizations specific to FAP, where you could share experiences and ideas, including:
- Amyloidosis Awareness
- Amyloidosis Foundation
- Smart Patients Amyloidosis Support Group
- Amyloidosis Support Groups
- Amyloidosis Research Consortium
Your health team or social worker may know of other groups and sources of support.
In addition to support groups, stay in touch with friends and family. Living independently and having a chronic illness like FAP can lead to feelings of social isolation, especially as people age. Getting together and spending time with others is important to your overall well-being.
Last updated: Oct. 22, 2020
FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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