Independent Living for Adults With XLH

Independent Living for Adults With XLH
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Living alone with a chronic disease such as X-linked hypophosphatemia (XLH) can be challenging. Here are some points to consider that may help you continue to live well and independently.

Know your disease

XLH is a rare disease, and clinicians have long focused on its effects on children. Many healthcare professionals can still lack adequate training about the disease in adults. For these and other reasons, it’s important that you find out as much as possible about your disease, and about what to expect as you get older.

Plan for the future

XLH is a progressive disease, with manifestations and symptoms that substantially affect your physical capabilities, your mobility, and your overall quality of life.

Some childhood symptoms can worsen with age, while other symptoms — including bone and joint pain, fractures, fatigue, stiffness, and hearing loss — tend to appear. Many adult patients also require frequent dental visits for tooth abscesses and other disease-related problems with their teeth, and some may need orthopedic surgery. Musculoskeletal pain in adults can be debilitating.

Because the cost of frequent medical visits can be considerable and the disease may make work untenable, it is important to plan in advance. Consider meeting with a financial adviser to discuss your medical care, finances, and the possibility of early retirement.

Control stress

Living with a chronic disease like XLH can be stressful, especially if you are living alone. Sources of stress can include discomfort, feelings of isolation, financial pressures, and uncertainty about the future.

Try to keep activities you enjoy a regular part of your life, and consider asking for professional help from a therapist for coping techniques to help manage stress and anxiety. Talk with your doctor if you are feeling hopeless or depressed.

Think about your location

It may be helpful to live near family and friends, who can support you in case of emergencies like falls or debilitating pain.

You might also want to consider living near large cities or research hospitals, which are more likely to have a pool of healthcare specialists who are more familiar with rare diseases like XLH. Choosing places with adequate and reliable public transportation can also be a key consideration.

Consider assistive devices

As joints stiffen and bones weaken, it can become harder to move around your home or accomplish daily life chores. There are a number of assistive devices available to help you with mobility, eating (easy-grip utensils) and dental hygiene, and with the hearing loss that can occur in XLH.

You may also need to install devices around the home to help with balance. These include grab bars for getting in and out of the shower, or stools to help when reaching for things. You might also consider placing storage shelves and countertops at lower levels about the house.

Use resources

Take advantage of available resources for people with disabilities that can help you to preserve your independence.

It’s also a good idea to find a support network, a community with which you can share experiences and that can offer advice on living with XLH. Two you might consider are the XLH network and XLH UK; your healthcare team may know of others, and of local groups.

Stay social

It is important to your overall health and quality of life to maintain social connections with friends and family, especially if living alone and with a chronic condition. Remember, even healthy people can struggle with social isolation as they age, so reach out and keep engaged.

 

Last updated: Oct. 16, 2020

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XLH 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.

Brian holds a Ph.D. in Biomedical Engineering from Case Western Reserve University and a Bachelors of Science in Biomedical Engineering from Georgia Institute of Technology. He has co-authored numerous scientific articles based on his previous research in the field of brain-computer interfaces and functional electrical stimulation. He is also passionate about making scientific advances easily accessible to the public.
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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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Brian holds a Ph.D. in Biomedical Engineering from Case Western Reserve University and a Bachelors of Science in Biomedical Engineering from Georgia Institute of Technology. He has co-authored numerous scientific articles based on his previous research in the field of brain-computer interfaces and functional electrical stimulation. He is also passionate about making scientific advances easily accessible to the public.
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