Tips for XLH Caregivers

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by Mary Chapman |

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adults and independence

A person who has a rare genetic disorder such as X-linked hypophosphatemia (XLH) may require frequent help from a caregiver to accomplish everyday tasks. As a caregiver, you often may be stretched to the limit meeting the needs of the patient or loved one.

XLH can pose many challenges for patients, which can overtax you as the caregiver. Here are some tips to help you cope with the stress of caregiving:

Practice self-care

Take care of your own emotional and physical health so that you have the well-being necessary to care for someone else. Be sure to exercise, eat healthful foods, get sufficient sleep, and take respite breaks often. Carve out time to do things you enjoy, or new activities you want to try. Get regular medical checkups and don’t ignore signs of possible ill health, or symptoms of depression.

Seek support from other caregivers

It’s important to know that you are not alone. A caregiver group can provide validation, empathy and encouragement. Look for one in your community. Often, the healthcare center where the patient you are caring for is treated will know of one.

The nonprofit XLH Network supports caregivers as well as patients.

Accept offers of help

Admit to yourself and others that you could use a hand. Then, let them help you. It’s best to be specific in suggesting things others can do to assist you, such as preparing a meal, running an errand or picking up groceries. Also, take advantage of local resources for caregivers, such as an Area Agency on Aging.

Organize medical info and legal documents

Knowing that the patient’s medical and legal information is current and easy to find can help lower stress levels. If you’re called upon to manage a patient’s finances, make sure legal and financial documents such as insurance policies and power of attorney are in place.

Focus on what you can do

Although some feelings of guilt are normal for caregivers, know that no one is a “perfect caregiver.” Believe that you are doing the best you can, and are making the best decisions, at any given time.

Set realistic goals

Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists, and establish a daily routine. Don’t feel bad about turning down requests that are draining.

Be open to new technologies

Caregiving for someone who has XLH can be a full-time job. You likely manage doctor appointments, provide transportation, make sure medications are taken on time, and much more. The good news is that there are lots of edgy technologies designed to make your life as a caregiver easier and to keep the person you are caring for as safe and healthy as possible. Take advantage of these helpful tools.


Last updated: April 10, 2020


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.