Respite Care for Families Affected by XLH

Respite Care for Families Affected by XLH

Providing constant care to a person who has X-linked hypophosphatemia (XLH) can be depleting emotionally, mentally and physically. Sooner or later, you must replenish your reserves. Respite care for families affected by XLH is an opportunity to rest, relax and recharge.

About XLH

XLH is a rare genetic disease characterized by low levels of phosphate in the blood. It can lead to a number of symptoms in children and adults, including bone abnormalities, muscle weakness and pain. As the disease progresses, patients can have difficulty walking and completing daily tasks.

Patients may be prone to osteomalacia — soft and weak bones — early osteoarthritis, fractures, stunted growth, and dental abscesses.

Symptoms of XLH can vary among individuals. They usually emerge in early childhood and last a person’s lifetime.

What is respite care?

Respite care is when someone looks after your loved one with XLH for a  period of time, usually for a few hours during the day or overnight, or perhaps  for longer periods. You might use such care occasionally or regularly, and it can be planned for an emergency.

Your loved one can be cared for in the home or elsewhere. With in-home respite, the caregiver might simply stay in your home while providing support and care. Alternatively, the respite caregiver might take the patient on an excursion, perhaps to a park or for a drive.

Center-based respite is when your loved one goes to a center on given days to be cared for as part of a group. Such centers often provide opportunities for  activities and outings.

There also are after-school programs that offer fun and inclusive activities for siblings. These programs give youngsters time away from what may be a somewhat stressful home environment if a relative has XLH.

How respite care can help

Helping someone manage XLH is difficult. According to the National Alliance for Caregiving, nearly four in 10 caregivers consider their situation highly stressful, and 28% of survey respondents report moderate emotional stress.

While it can be complicated to take a break from caring for a loved one, doing so is good for you, your family, and your loved one with XLH. It gives you a chance to rejuvenate and take care of yourself. Ultimately, this will allow you to be a better caregiver.

You could catch up with friends, exercise, take a vacation, visit a restaurant, or simply enjoy a full night’s sleep. If it’s your child who has XLH and you have other children, you could use this time to focus on them. Be sure to find something that helps you relax, even if it’s just going for a walk or finding time to take a few deep breaths and clear your mind.

Respite care also could be a break for your child or older relative with XLH. Their usual routine can be relaxed, giving them the opportunity to do something different. This promotes new skill development and independence.

Finding respite care

Perhaps the patient’s clinician or a support organization such as the XLH Network can help with a referral for respite care. In the U.S. and Canada, private respite care programs also can be located via the ARCH National Respite Network and Resource Center.

You may choose to arrange care informally with family and friends while you go out for the evening or attend an appointment. You also may wish to look into community recreational offerings at local libraries or clubs.

Sometimes a home health worker who visits during the day and has established a good relationship with your loved one with XLH can supply respite for longer periods, allowing you to travel or maintain your own health.

Your options depend largely on where you live, the patient’s age and needs, and what you hope to gain from respite care. Because formal services often have waiting lists, it’s a good idea to plan ahead.


Last updated: Jan. 22, 2021


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 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.

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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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