Support Networks for Families Affected by XLH

Support Networks for Families Affected by XLH
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Building and maintaining a good support network — of friends, family, peers, and co-workers — is important to physical and mental health, and a strong source of resilience in times of stress and anxiety, or feelings of depression.

Studies are yet to specifically address how support networks help those living with X-linked hypophosphatemia (XLH). But as with other chronic and rare diseases, it’s likely a good support network is quite important for people with XLH and their families. Some who have written about their experiences consider such networks invaluable.

What is a support network?

A support network is, much as its name implies, a network made up of all the people who support you. These are the people you are connected to both intimately and socially: family, friends, colleagues. They are the people you call when you need help, or when you have good news to share.

How can a support network help?

Stress, anxiety and depression are known to affect parents of children with disabilities at higher rates than are found in the general public.

Researchers don’t know why, from a biological point of view, interaction with others is important for physical and emotional well-being. However, the effects seem clear — connecting with others makes us fundamentally healthier, happier, and less stressed.

Still, finding or building a support network can be difficult, especially for families facing a newly diagnosed disease. And when that disease is quite rare, like XLH, it’s easy to feel as if no one else could really understand what you’re going through. Or to feel like you’re only going to burden family and friends by reaching out, because chronic diseases don’t go away and you’re going to need help for a long time.

How can I find XLH support groups?

If you don’t already have a support network and don’t feel up to building one, a structured support group may be of help.

For some, such groups can be found through religious organizations, the workplace, or involvement in the community.

But online and local structured support groups are also available for families affected by XLH. Talk to your healthcare team about such groups that might be in your area. You can also search for support groups online, including on social media.

Here are links to some XLH associations or information sources that can be starting points for a support group:

 

Last updated: March 26, 2020

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X-Linked Hypophosphatemia 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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