Fostering Health and Wellness
Understand common challenges related to XLH and find resources for supporting physical and mental health.
Mental and physical health are closely connected. Many things can affect how someone feels, such as stress or tough life events.
People with rare conditions may sometimes feel alone, especially if their symptoms make it hard to join social activities. Living with a progressive condition like XLH can also make it harder to stay active and keep healthy habits.
The most challenging aspect of living with XLH for me is to put myself out there because I grew up with anxiety. It was a challenge for me to be able to find my own voice through XLH. Thankfully I’ve learned to embrace who I am.
Trinity
Living with XLH
It is important to recognize that you or your loved ones are not alone. There are organizations that provide resources, support services, and opportunities to connect with others in the rare community. Visit the Daily Living with XLH page to learn more.
Mental Health
Mental and emotional health are impactful issues in both children and adults living with XLH.1 Navigate the tabs below to learn more about mental health support throughout the life stages.
Adults
There are many mental health conditions. Depression and anxiety were the most common mental health conditions experienced by the 56 adults with XLH who participated in the XLH Community impact survey.1
Depression and anxiety can make it hard to take care of yourself or handle work or family life. Read below to learn about mental health support. If you are worried about your or your loved one’s mental health, talk to a doctor or a mental health professional.
For information about older adults with XLH, see the XLH over 50 section of the Key Transitions chapter.
Managing stress
Stress can help with achieving a goal or focusing. Sometimes, though, stress may become too much to cope with.2 Fortunately, there are ways to handle and reduce stress.
Consider trying to focus on one or more of these approaches to help manage stress2:
- Do light physical activity, like a short walk
- Make sure to always consult with your healthcare provider before starting any new physical activity
- Engage in a mentally stimulating activity like a jigsaw puzzle, coloring book for adults, or reading
- Spend time outside and enjoy a nice view, a warm day, or a gentle breeze
- Connect with yourself through prayer, meditation, or other forms of spirituality
- Spend quality social time with friends or family, or even pets
- Practice relaxation techniques like breath work, mindfulness, stretching, and gentle yoga3
Letting others know about mental health struggles
While it may be hard, speaking up can have many benefits. Friends or family may be able to offer emotional support and just telling someone else may improve one’s mood.4
Here are some suggestions for sharing mental health concerns with others4:
- Talk with someone while in a positive mood. It can be easier to share about depression, anxiety, or other mental health conditions when these challenges feel under control, rather than when at their worst.
- Share if it serves a purpose. If mental health challenges are affecting a relationship with a family member or friend, discussing mental health issues may help them understand the situation better.
- Give concrete examples. Being specific will help people understand mental health concerns. Instead of saying, “I have anxiety attacks,” give a real-life situation. “When we are in a crowd, I can get very anxious.”
Taking action in a crisis
A mental health crisis is a situation in which a person is at risk of harming themselves or other people.5 It can also be a situation where a person’s emotions and behavior are uncontrollable.5
The 988 Lifeline is a resource for finding mental health support for yourself or a loved one in a crisis.6
Call or text 988 or chat at 988lifeline.org.6
To handle any crisis, including a mental health crisis, it can be helpful to plan ahead. Consider the following steps:7
- Know who to contact in case of emergency.
- Know the situations that could trigger anxiety, fear, or depression in yourself or your loved one. Work with a mental health provider or doctor to develop a plan or routine to manage them when encountered.
- Know how your body reacts to changes in your mental health. The earlier you can identify these changes, the better you will be able to cope with them.
Using health insurance
Many people think of health insurance as an aspect of their physical care, but coverage may also be provided for mental health care.
Check health insurance plans to understand if or how they cover mental health services.
- Check to see if the mental health providers are in the plan’s network.
- Primary care physicians or other doctors may assist with finding a mental health doctor.
Young Adults
There are many mental health conditions. Depression and anxiety are two examples.
Depression and anxiety can make it hard to take care of oneself or handle work or school. Read below to learn how to support mental health.
If you are worried about your mental health, talk to a doctor or a mental health professional. A mental health professional can help diagnose mental health conditions by understanding a person’s history of feelings and symptoms.8 Having a diagnosis can help determine next steps for care. It can also help with insurance coverage for care.8
Whether in school or starting in the workforce, there are habits that can help support mental health9:
- Eat well
- Get enough sleep
- Exercise as appropriate
- Make sure to always consult with your healthcare provider before starting any new physical activity
- Consider making time to meet new people and get involved with social activities
Attending college
Whether a person moves away from home to go to school or goes to a local school, starting college is a big change. Learn what support is available from your college, both for your mental health and for your XLH.
Most colleges have a Disability and Accessibility Office and may also have a mental health center.9 They can help those with a mental health diagnosis understand resources and services to help support mental and physical health.9
To learn more about going to college with XLH, visit the Going to College section of the Key Transitions page.
Using health insurance
Many people think of health insurance as an aspect of their physical care, but coverage may also be provided for mental health support.
Check health insurance plans to understand if or how they cover mental health services.
- Check to see if the mental health providers are in the plan’s network.
- Primary care physicians or other doctors may assist with finding a mental health doctor.
There are resources to help young adults navigate mental health*:
National Alliance on Mental Illness
- Information on mental health, how to use insurance, where to find support
The Jed Foundation – Mental Health Resource Center
- Resources to help protect the mental health of young adults
The Mental Health Foundation – College Mental Health Toolkit
- Information and resources for college students
*This is a curated list and is not meant to be an exhaustive list of all organizations, services, or online resources. These resources are created by and hosted on third party websites that are not reviewed, controlled, or endorsed by XLH Network or Kyowa Kirin.
Teens
Being a teenager is never easy. Living with a rare condition can mean facing more challenges. It is important for teens to take care of their mental health and find support when they need it.
Talking about mental health
It can be helpful to talk to friends and parents about feelings. Many teens find it helpful to plan what they want to say. Consider10:- Sharing specific examples to help friends and parents understand the situation
- Writing down the plan and referring to notes during the conversation
- Explaining how managing stress and other mental health concerns is going so far
- Finding a time and a private space to talk
- Inviting the person to ask questions
Using Social Media
Many teens regularly use social media, which can be a way to connect with others living with XLH. In a survey, teens noted they use social media to11:
- Feel less alone
- Distract when they feel anxious
- Access smaller, more digestible bits of information
- Provide support for their mental health
- Feel connected to the wider world
However, social media can cause problems for teens, resulting in11:
- Losing track of time and spending hours scrolling
- Falling into “black holes of negativity”
- Feeling body-shamed
- Comparing themselves to others who they perceive to have a better life
- Being exposed to unhealthy conflict in comments
While most teens view social media as generally positive, a majority say they have experienced bullying online.11 Consider talking to parents or friends about the impacts of social media.11 It might also be worth limiting use of social media, for example using the screen time limits built into some phones.11
Navigating School & Bullying
Unfortunately, many teens experience bullying at school. Bullying is aggressive behavior by one or more people against another person.12 Bullying can be verbal or physical like name calling, threats, kicking, punching, or other types of bodily harm.12 Bullying can be in person, but it can also happen on social media.12 For teens, some strategies to deal with bullying can include13:- Staying calm
- Staying off or limiting time on social media
- Trying to ignore bullies on social media
- Telling a trusted adult about what is happening
- Keeping yourself surrounded by people you trust
Attending college
Whether a person moves away from home to go to school or goes to a local school, starting college is a big change. Learn what support is available from your college, both for your mental health and for your XLH.
Most colleges have a Disability and Accessibility Office and may also have a mental health center.9 They can help those with a mental health diagnosis understand resources and services to help support mental and physical health.9
To learn more about going to college with XLH, visit Key Transitions.
There are resources to help teens navigate mental health*:
National Alliance on Mental Illness
- Information on mental health and where to find support
Global Genes – Navigating Emotions: A Guide for Teenagers with Rare Diseases
- Provides individual tools for use at school, at home, and in social situations
The Jed Foundation – Mental Health Resource Center
- Resources to help protect the mental health of teens and young adults
Stomp Out Bullying – HelpChat Crisis Line
- Offers a free and confidential online chat for teens with issues around bullying and cyberbullying
National Alliance on Mental Illness – Social Media for Teens
- Information and resources for college students
Kids
Many parents are concerned about their child’s mental health. Listening to and observing children’s behavior can be a crucial first step in supporting a child’s mental health. Children may not understand or want to admit they are struggling.
Talking with Kids about Mental Health
It is important to talk with kids about their feelings on a regular basis14. Consider14:
- Letting the child know that everyone has feelings
- Sharing your own feelings and how you handle them
- Asking open-ended questions instead of only yes or no questions
- For example, “How have you been feeling lately?”
- Finding a calm time to talk about any concerns
Finding Help
Parents and caregivers often know when their children are having a good day. They know when they’re having a bad day. They can also recognize unexpected behavior.
Unusual behavior can be a warning sign of mental health issues.15 These behaviors may include difficulty doing normal tasks like homework, social events, or play time.15 Changes in personality may also be a warning sign.15
If these changes last for more than a few weeks, consider talking to the child’s mental health professional.16 If they are not seeing a mental health specialist, contacting their pediatrician can be a good place to start.16
When seeing a child’s mental health professional or primary care provider, it can be helpful to explain observations and be prepared with16:
- The child’s medical history, including mental health history
- How symptoms have changed over time
- A list of all medications the child takes
- Any other information that could help the provider understand the child’s situation
It’s important to advocate for children’s care, including ensuring they receive the support and treatment they need.17 Once a child has a therapist, it can be helpful to monitor how the relationship between them is going.17 It may take a while for them to build a bond and for everyone to see benefits.17 However, if things don’t seem to be working, the child may need a different provider.17
If a child’s mental health situation is critical, go to the emergency room.17 The child can get the help they need during a crisis and the staff can help find longer-term mental health care.17
There are resources to help parents support their children’s mental health*:
National Alliance on Mental Illness – Talking to Kids about Mental Health
- Information and resources for parents and caregivers
The Kids Mental Health Foundation
- Resources for talking with children about mental health
Stomp Out Bullying
- Resources to help parents handle bullying
National Alliance on Mental Illness – 10 Questions on a Tuesday
- Ten questions parents can ask their children to support their mental health
National Alliance on Mental Illness – Meet Little Monster
- A coloring and activity book to help caregivers talk to their children about feelings
Caregivers
Being a caregiver is a big job. For many caregivers, it’s one job of many. Having so many demands can be taxing on physical and mental health. Also, an important part of taking care of others is taking care of yourself and your own needs.
If you are worried about your or your loved one’s mental health, talk to a doctor or a mental health professional.
Managing stress
Stress can help with achieving a goal or focusing. Sometimes, though, stress may become too much to cope with.2 Fortunately, there are ways to handle and reduce stress.
Consider trying to focus on one or more of these approaches to help manage stress2:
- Do light physical activity, like a short walk
- Engage in a mentally stimulating activity like a jigsaw puzzle, coloring book for adults, or reading
- Spend time outside and enjoy a nice view, a warm day, or a gentle breeze
- Connect with yourself through prayer, meditation, or other forms of spirituality
- Spend quality social time with friends or family, or even pets
- Practice relaxation techniques like breath work, mindfulness, stretching, and gentle yoga3
Letting others know about mental health struggles
While it may be hard, speaking up can have many benefits. Friends or family may be able to offer emotional support and just telling someone else may improve one’s mood.4
Here are some suggestions for sharing mental health concerns with others4:
- Talk with someone while in a positive mood. It can be easier to share about depression, anxiety, or other mental health conditions when these challenges feel under control, rather than when at their worst.
- Share if it serves a purpose. If mental health challenges are affecting a relationship with a family member or friend, discussing mental health issues may help them understand the situation better.
- Give concrete examples. Being specific will help people understand mental health concerns. Instead of saying, “I have anxiety attacks,” give a real-life situation. “When we are in a crowd, I can get very anxious.”
Taking action in a crisis
A mental health crisis is a situation in which a person is at risk of harming themselves or other people.5 It can also be a situation where a person’s emotions and behavior are uncontrollable.5
To handle any crisis, including a mental health crisis, it can be helpful to plan ahead. Consider the following steps7:
- Know who to contact in case of emergency.
- Know the situations that could trigger anxiety, fear, or depression in yourself or your loved one. Work with a mental health provider or doctor to develop a plan or routine to manage them when encountered.
- Know how your body reacts to changes in your mental health. The earlier you can identify these changes, the better you will be able to cope with them.
The 988 Lifeline is a resource for finding mental health support for yourself or a loved one in a crisis.6
Call or text 988 or chat at 988lifeline.org.6
Using health insurance
Many people think of health insurance as an aspect of their physical care, but coverage may also be provided for mental health care.
Check health insurance plans to understand if or how they cover mental health services.
- Check to see if the mental health providers are in the plan’s network.
- Primary care physicians or other doctors may assist with finding a mental health doctor.
There are organizations and online communities that can provide the opportunity to share experiences, learn from others, and receive and provide emotional support18.*
Parent to Parent USA
- Information and one-on-one support for parents and caregivers of children who have special healthcare needs
Caregiver Action Network – Kindly Human: Caregiver Resource for Real-Time Peer Support
- Access to trained peers with similar experiences
Give an Hour
- Provides resources for rare caregivers
Mental Health Resources
If you are worried about your or your loved one’s mental health, talk to a doctor or a mental health professional.
The organizations and resources listed below provide mental health education, support services, and opportunities to connect.*
988 Suicide and Crisis Lifeline
- Provides confidential emotional support via
- Call
- Text
- Chat
Global Genes – Finding Support: A Compilation of Emotional and Mental Health Resources in the United States
- A list of national hotlines and mental health resources by state
211
- Support in finding mental health resources and services
National Alliance on Mental Illness
- Offers peer-to-peer support groups for
- People needing help with mental health
- Family members of people struggling with mental health
Rare Disease Mental Health Resource Guide
- Resources to support mental wellness for
- Adults
- Parents or caregivers
- Teens and kids
NORD – State Resource Center: Mental Health
- A listing of programs that provide free or low-cost mental health services and information
Center for Chronic Illness – Rare Chronic Illness Support Groups
- Virtual support group meetings for people living with rare conditions
Physical Wellness
Mental health is only part of the health story. Taking care of one’s physical health is important for XLHers as well. For everyone, and especially people with XLH, eating well, getting enough sleep, and exercising can be an important part of maintaining physical health.19–21
Eating Well
Getting enough calcium is important for bone strength, and vitamin D helps the bones absorb calcium.22,23
As a result, too little of either calcium or vitamin D can harm bone growth.22,23 XLH care providers may prescribe supplements to help manage XLH.24,25 Always ask your doctor before you or your child starts or changes supplements for XLH. Your doctor may also suggest seeing a dietician to review diet.
The best advice I’ve been given about XLH is to celebrate everything no matter what size it is. Whether you walked further today than you walked yesterday, each success is measured differently. It’s never a bad thing to be able to go at your own pace and celebrate how far you’ve gone.
Trinity
Living with XLH
Exercising
Along with eating well, certain exercises can help improve bone health.19,20,26 Weight-bearing exercises might help build more bone. Appropriate exercise can also include low-impact aerobics like walking. Building more bone may help reduce the risk of fractures.26 Exercises that improve muscle strength, flexibility, and balance may be worked into a program.26 It’s important to talk to a doctor before starting any exercise program. They can help determine which exercises are right for you or your loved one.
Some pain may be directly related to bone issues. Other pain may be related to other aspects of XLH.27 There are doctors who specialize in pain management.28 For more information about managing XLH, see the Finding XLH care section.
This information is provided for educational purposes only and is not meant as professional advice or to replace a consultation between you and your healthcare provider. Please consult your healthcare provider for individualized questions and support.
References
- Data report from 2024 XLH Community Impact Survey and Interviews. Kyowa Kirin, Inc. and The XLH Network. August 2024.
- Ponte K. Ways to Manage and Cope with Stress. National Alliance on Mental Illness. January 13, 2020. www.nami.org/blog/ways-to-manage-and-cope-with-stress.
- Six relaxation techniques to reduce stress. Harvard Health. www.health.harvard.edu/mind-and-mood/six-relaxation-techniques-to-reduce-stress.
- Disclosing to Others. National Alliance on Mental Illness. www.nami.org/living-with-a-mental-health-condition/disclosing-to-others.
- What to Do If Your Child Is in Crisis. National Alliance on Mental Illness. ww.nami.org/kids-teens-and-young-adults/kids-and-parents/what-to-do-if-your-child-is-in-crisis.
- Resources for Immediate Response. Mental Health America. mhanational.org/resources/resources-for-immediate-response.
- Think Ahead. Mental Health America. screening.mhanational.org/wp-content/uploads/2017/10/Worksheet-Think-Ahead.pdf.
- Understanding Your Diagnosis. National Alliance on Mental Illness. www.nami.org/living-with-a-mental-health-condition/understanding-your-diagnosis.
- Mental Health in College. National Alliance on Mental Illness. www.nami.org/kids-teens-and-young-adults/young-adults/mental-health-in-college.
- How to Talk to My Parents or Guardian. National Alliance on Mental Illness. www.nami.org/kids-teens-and-young-adults/teens/how-to-talk-to-my-parents-or-guardian.
- Social Media and Youth Mental Health. Mental Health America. mhanational.org/resources/social-media-and-youth-mental-health.
- Bullying - Tips for Parents. Mental Health America. mhanational.org/resources/bullying-tips-for-parents.
- Bullying - What To Do If I’m Bullied. Mental Health America. mhanational.org/resources/bullying-what-to-do-if-im-bullied.
- Hoet A. Talking to Kids about Mental Health. Kids Mental Health Foundation. September 2025. www.kidsmentalhealthfoundation.org/mental-health-resources/mental-wellness/talking-to-kids-about-mental-health.
- What to Look For and When to Act. National Alliance on Mental Illness. www.nami.org/kids-teens-and-young-adults/kids-and-parents/what-to-look-for-and-when-to-act.
- Learning to Help Your Child and Your Family. National Alliance on Mental Illness. www.nami.org/family-members-and-caregivers/learning-to-help-your-child-and-your-family.
- Finding Mental Health Care for Your Child. National Alliance on Mental Illness. www.nami.org/kids-teens-and-young-adults/kids-and-parents/finding-mental-health-care-for-your-child.
- Caring for the Caregiver. San Francisco Moms. January 20, 2025. Sanfranciscomoms.com/mom-life/relationships/caring-for-the-caregiver-practical-tips-for-managing-stress-building-support-networks-and-improving-mental-health.
- Benefits of Healthy Eating for Adults. Centers for Disease Control and Prevention. February 14, 2024. www.cdc.gov/nutrition/php/resources/healthy-eating-benefits-for-adults.html.
- Benefits of Healthy Eating for Children. Centers for Disease Control and Prevention. February 15, 2024. www.cdc.gov/nutrition/php/resources/healthy-eating-benefits-for-children.html.
- Benefits of Physical Activity. Centers for Disease Control and Prevention. December 4, 2025. www.cdc.gov/physical-activity-basics/benefits/index.html.
- Calcium and Your Bones. Bone Health and Osteoporosis Foundation. www.bonehealthandosteoporosis.org/healthy-bones-guide-calcium-bones.
- Why is Vitamin D Important? Bone Health and Osteoporosis Foundation. www.bonehealthandosteoporosis.org/healthy-bones-guide-vitamin-d.
- Khan, A, et al. X-linked hypophosphatemia management in adults: an international working group clinical practice guideline, J Clin Endocrinol Metab, Volume 110, Issue 8, August 2025, Pages 2353–2370, https://doi.org/10.1210/clinem/dgaf170.
- Ali DS., et al. X-linked hypophosphatemia management in children: an international working group clinical practice guideline. J Clin Endocrinol Metab. Published online February 17, 2025. doi: https://doi.org/10.1210/clinem/dgaf093.
- Exercising with Osteoporosis. Mayo Clinic. March 12, 2025. www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis/art-20044989.
- X-linked dominant hypophosphatemic rickets. Natl Inst Health Genet Rare Dis Inf Cent GARD. September 2025. rarediseases.info.nih.gov/diseases/12943/x-linked-dominant-hypophosphatemic-rickets
- RareDisease.net. Doctors and specialists who treat X-linked hypophosphatemia. April 2025. raredisease.net/clinical/doctors-x-linked-hypophosphatemia.
