Independent Living for Fabry Disease Patients

Independent Living for Fabry Disease Patients
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Having a chronic condition such as Fabry disease can be particularly concerning if you are living alone. However, there are steps you can take to help you live well and independently.

Get educated

With a chronic disease, you are in a different place than someone with an acute illness. You are the day-to-day manager of your condition. The first step to success is to learn everything you can about your disease, and what to expect. It’s important to know the ins-and-outs of your symptoms and their treatment.

Fabry affects the whole body, causing chronic and intense episodes of pain in the hands and feet, skin rash, and a progressive loss of vision, hearing, and kidney function. There also is an increased risk of heart attacks and strokes.

However, if symptoms are well-managed, people with Fabry can live full, productive, and independent lives. Becoming educated about the disease is the first step in managing your symptoms.

Control stress

Having a chronic illness adds stress to everyday life, especially if you are living alone. Sources of stress can include symptom discomfort, feelings of isolation, financial pressure, and uncertainty about the future.

Assessing your situation and developing a path forward can go a long way toward reducing stress. Encourage your family members to be involved, if possible, and develop open communication with your healthcare team. A financial advisor also may be of help.

Having someone legally in place who, if necessary, can make health and financial decisions on your behalf also can bring greater peace of mind.

Re-evaluate your location

If you wish to continue living on your own, it might make sense to move closer to family members who can help support you.

You also may want to consider residing in an area that offers reliable public transportation, particularly since adults with Fabry disease usually have heart problems and decreased lung function. Such problems may affect your ability to walk more than a short distance.

Because you may ultimately need dialysis, you may at some point wish to move closer to where treatment is available.

Take advantage of community resources

Fabry disease can be very stressful and wear down patients’ physical and mental health. Compared with the general population, people with Fabry disease can have a considerably lower quality of life. Pain is a contributing factor to poorer outcomes, making it important to take steps to minimize its occurrence to the degree possible.

Tapping into local resources can help in addressing issues like transportation to a doctor’s appointment or getting groceries. There are local government programs and services available that can help with daily life. Your local library also may have information about community resources.

Stay socially involved

Even healthy people who live alone sometimes don’t thrive as well as others because of a tendency, with advancing age, toward social isolation. If you’re living independently and with a chronic condition, it’s important to your overall health and quality of life to maintain social engagement.

Particularly if close family is not nearby, it’s important that you have friends or neighbors who know about your condition and its symptoms and can help you in case of an emergency. Such knowledge also will help your friends and colleagues be more understanding of disease-related absences from work, school, or social events.

Finally, find a support group in your local area or online for people with Fabry disease. Your healthcare provider may be able to help you locate one. Here, you can share experiences and connect with others who understand what you’re going through. In addition to physical disabilities, emotional and psychological factors play an important role in the lives of patients with Fabry disease. Getting connected can help you stay socially involved.

Get help with daily tasks

Because of your disease, you may sometimes need help with self-care tasks, household chores, or getting to appointments. Maintain a list of people you can ask for help.

If you don’t have someone to turn to, ask your provider or social worker about helpful services that may be available in your area. You may be eligible for meal delivery to your home, for example, or a home health aide.

 

Last updated: Oct. 9, 2020

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Fabry Disease News 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 provider 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

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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