Daily Living with XLH
This section provides useful information for day-to-day life with XLH. Topics include things like school, work, managing money, health insurance, and more.
Navigate Daily Life with XLH
If you have questions or want to learn about something not listed here, consider talking to your doctor.
XLH can be very challenging and can make you feel like you’re alone, but there is a community out there. Living with XLH is nothing more than getting through the next day, just trying to be yourself, and embracing all the challenges that come your way.
Trinity
Living with XLH
Connect with Others
Connecting with others with shared experiences can be helpful for people with rare conditions. Expert medical providers may be another good source for information about the experiences of others living with XLH.
Find compassion, share experiences, and learn about what helps in daily life from others on the XLH journey.
This can be done:
- In person
- Over the phone
- Online or through social media channels
- Through email
Advocacy organizations connect people with all kinds of conditions.
This can include:
- Creating opportunities for people to meet and support each other, such as the XLH Network’s XLH Day and XLH Camp programs
- Providing resources and education
- Raising awareness
- Supporting research
- Among other things (like advocating for policy, raising funds, learning about XLH specialists, etc.)
Connecting with advocacy organizations can be a helpful starting point to find others to talk to and share experiences.
It had changed my life. I really thought I was the only person in the whole world that had XLH. Coming to these networks and events and meeting people and building friendships. You’d be amazed about what’s out there and who’s there for you.
Kate
Living with XLH
The XLH Network is one of the primary advocacy organizations dedicated to helping XLHers and their families access support. Their services include:
- Educational resources about XLH
- Live and virtual events to connect with others
- Peer support
- Referrals
Rare Disease Patient Advocacy Organizations*
Learn more about other advocacy organizations that may be helpful for the XLH experience below.
Global Genes
- Live and virtual events to connect with others
- Services to help with diagnosis, finding care, and other support needs
National Organization for Rare Disorders (NORD)
- Live and virtual events to connect with others
- Patient assistance programs to help with medication access, financial needs, and caregiver support
Special Interest Patient Advocacy Organizations*
Caregiver Action Network
- Live and virtual events to connect with others
- Education, peer support, and resources for a range of caregivers including those caring for children and adults with disabilities
Courageous Parents Network
- Educational resources for families caring for children with serious medical conditions
- Live and virtual events to connect with others
Our Odyssey
- Social and emotional support for young adults affected by rare and/or chronic conditions
*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.
Career Considerations
For people living with a chronic and potentially disabling condition, like XLH, choosing a career or work place may involve broader considerations. Learn about workplace resources at the links below:*
ADA.gov
- Introduction to the Americans with Disabilities Act
- Employer requirements to support Americans with disabilities
Job Accommodation Network
- Education on workplace accommodations
- Resources to speak with an expert via online chat or phone
Understood
- Information about workplace support and accommodations
Rehabilitation Services Administration
- Offers employment support for people with disabilities
- Find contact information for a specific state agency
Global Genes Rare Toolkit: Understanding Career Employment
- Educational toolkit on employment considerations for people with rare and chronic conditions
- Topics include considerations for:
- Finding the right job
- Requesting accommodations
- Disclosing a rare condition
- Assessing company culture
- Understanding benefits, including health insurance
I’ve done accounting for 27 years. It’s a sit-down job, it’s flexible with hours… I can walk, I can stand, I can adjust, depending on what my body needs that day.
Kate
Living with XLH
School Support
Growing up can be hard, but growing up and going to school with XLH can come with unique challenges and complexities.
Responses from 20 caregivers and children who participated in the XLH Community Impact Survey revealed that the top 3 most burdensome aspects of XLH in children were pain, issues at school, and mental and emotional health.1 Caregivers reported challenges for children with XLH like absences and reduced productivity in school due to XLH, mental and emotional challenges such as being self-conscious or looking different and not being able to keep up physically.1
Working with your child’s school for available resources can help children with XLH thrive in school. But the process for getting support can be both challenging and rewarding. That’s why learning about available resources and how to advocate for children with XLH is critical.
Going to school you anticipate being different and being out there especially with one of the symptoms being your gait. But I think going to school really helped me embrace who I am and I don’t really get nervous about people staring at me anymore.
Trinity
Living with XLH
Learn important terms and find available resources below*:
Individualized Family Service Plan (IFSP) / Early Intervention2
- A written plan for infants and toddlers (birth–age 3) with developmental delays or disabilities
- Outlines services that a child and family will receive to help babies and toddlers learn basic and new skills that develop in the first 3 years of life
- Focuses on supporting the child’s development within everyday routines and family‑centered settings
504 Plan3
- Formal document providing accommodations in the classroom to help children with disabilities thrive.
- No special services or supports are provided.
- Examples include adjustments to:
- The setting, such as completing tests in a distraction-free space
- How material is delivered, such as using audiobooks instead of printed text
- Learning supports, such as receiving lesson outlines in advance
Individualized Education Program (IEP)4
- A document that outlines learning goals, accommodations, and support services for students with disabilities
- Examples include learning specialists in the classroom and services such as speech therapy
- Developed by a team of school personnel and the child’s parents or caregivers
*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.
Managing Finances with XLH
Managing a chronic rare condition like XLH can be costly.1 XLHers may need to:- See doctors and specialists more often
- Miss work due to appointments or symptoms associated with XLH
- Travel to see specialists
- Get special equipment to help them with walking, mobility, and other activities of daily living
- Make changes to their home to make daily living easier for them
- Prepare for other unexpected expenses
- May require help with transportation to appointments and for other daily living tasks
Navigate to the Aids and Adaptations section for information about aids and adaptations.
People with XLH may seek financial assistance from various organizations.5 Additionally, resources are available to learn more about managing money when living with a rare condition like XLH. Find more information at the link below:*
Global Genes Rare Toolkit: Financial Literacy and Navigation in Rare Disease
- Information about:
- Healthcare access and affordability
- Financial planning
- Health insurance
*This 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.
Navigating Health Insurance
Health insurance provides benefits to cover medical services people with XLH may need, such as:
- Doctor appointments
- Lab tests
- X-rays and other tests
- Hospital stays
- Surgeries and other procedures
- Medicines
Types of Insurance
There are different types of health insurance.
Private Insurance
Private insurance is either provided as a benefit through an employer or purchased from an insurance company using a healthcare marketplace.6
For people purchasing health insurance through a healthcare marketplace, healthcare.gov provides information on6:
- When to enroll
- What information you need for enrollment
- Coverage options
- How to enroll
Though the healthcare marketplaces are run by the federal and state governments, the insurance policies sold there are private, not public insurance.6
Public Insurance
Public insurance is insurance provided by the federal, state, and in some cases local governments.7 The main types of public insurance are Medicare and Medicaid.7
Medicare is an insurance program for people 65 or older and for younger people with disabilities.8
- Visit Medicare.gov to learn more about eligibility and enrollment.
Medicaid provides low-cost or no-cost coverage to eligible people of all ages with limited income, including people with disabilities.9
- States have different rules to determine who can qualify for the program.9
- Some states call their Medicaid program by a different name.9
- Visit Medicaid.gov to learn more about Medicaid eligibility in different states.10
Resources are available to help people with conditions like XLH navigate health insurance. Learn more at the resources below.*
Global Genes Rare Toolkit: Navigating the U.S. Health System for Young Adults
- Guide for young adults who are beginning to manage their care
- Types of health insurance
- Questions to ask about health insurance plans
- Parent employer-based insurance
- Student health programs
- Denials and appeals
XLH Link: Sample Dental Medical Necessity Letter
- Sample letter for dentist to send to insurance company to get coverage
Global Genes Rare Toolkit: Navigating Health Insurance
- Types of health insurance
- Prior authorization process
- Denials and appeals
- Patient assistance programs
Claim Your Care: Health Coverage Toolkit
- Understanding health insurance
- Healthcare acronyms
- Open enrollment tips
- Explanation of benefits
Important Insurance Terms
There are many terms to know when it comes to health insurance. Below are some common terms you may see when navigating health insurance.
Terms to understand how much a person may pay for care
Copays
Also known as a copayment, this is a fixed amount a person pays for medical services, like doctor visits or prescription drugs.12 The amount is set by an individual’s insurance plan and can be different depending on the service received.12
Coinsurance
The percentage of costs for a medical service paid by a person after the insurance deductible is reached.13 If a person has met their deductible and has a 20% coinsurance for a $100 office visit, they will pay $20 out-of-pocket.13
In-network
Refers to hospitals, doctors, institutions or other healthcare providers who are contracted to work with a person’s insurance. These doctors and facilities are referred to as in-network.15
Insurance Premium
The amount a person pays for their health insurance coverage each month.16
Health Savings Account (HSA)
A type of savings account that allows a person to set aside money for qualified medical expenses on a pre-tax basis, to be used at any time.18 A person can only have an HSA if they have a HSA-eligible plan.18 This is usually a high-deductible health plan that only covers preventative services before the deductible.18
Deductibles
The amount a person pays for medical services before the insurance plan begins to cover costs.11
Out-of-pocket maximum
The most a person will pay for medical services over the course of the year. After a person reaches the limit from paying copays, coinsurance, and deductibles, the insurance plan pays the full amount of future services that year.14
Out-of-network
Institutions and healthcare providers who are not covered by a person’s insurance are called out-of-network.15 A higher percentage of the cost is usually covered by insurance for services provided in-network than for out-of-network.15
Prescription drug coverage
Health insurance that helps pay for medicines prescribed by a person’s doctors.17
Flexible Spending Account (FSA)
A program through a person’s employer that allows them to pay for medical expenses with pre-tax dollars.19 Unlike HSAs, these accounts are not tied to having a high-deductible health plan.19 Also, these funds may not roll over to the next year, depending on the employer’s plan.19
Terms that may impact prescription drug costs
Insurance Accumulators
A program used by some health insurance plans that generally does not allow third-party co-pay assistance (for example from a drug manufacturer) to count toward annual deductibles and out-of-pocket maximums.20
Insurance Maximizers
A maximizer program sets a person’s monthly payment for a medicine based on the maximum co-pay assistance offered by the drug maker.20 The maximizer may be applied either in even intervals throughout the year or front-loaded in the early months to obtain the maximum amount of co-pay assistance as early as possible.20 Some maximizers don’t go into effect until the person satisfies their deductible through other health care costs.20 Like accumulators, maximizers do not count toward a person’s deductible and out-of-pocket maximum.20
Terms to understand insurance coverage and care access
Prior authorization
Approval from a health insurance plan for coverage of a medicine or a medical procedure before a person can receive it.21
Step therapy
A process in which an insurance company requires a patient to try one or more management options first before the approach the doctor prescribed.23 This is also known as “fail first.”23
Appeal
A request for a health insurance company to reconsider a decision that denies a benefit or payment.24
Referral
An order from a primary care doctor for a person to see a specialist. Health insurance plans may require a referral to cover the service.22
Denial
The decision by an insurance company to not cover a medicine, service, or other type of care.24
Peer-to-Peer Review
Process where a doctor discusses a patient’s medical needs with the insurance company if a service, procedure, or medication has been denied.25
Travel
Travel can take some extra planning for people with XLH, who may travel with:
- Assistive devices like wheelchairs, braces, or walkers
- Prescription medications
- Accompanied by a caretaker
Here are some resources to explain what travelers with XLH can expect and how to prepare.*
Johns Hopkins Healthcare: Traveling with A Chronic Condition
- Tips for planning travel with a chronic condition
Global Genes Rare Parenting: Traveling1 with Chronic Illness and Children
- Tips for planning travel with a chronic condition
U.S. Department of Transportation: Assistive Device Stowage
- Information about air travel with a wheelchair or other assistive device
The Airline Passengers with Disabilities Bill of Rights
- Outlines the rights of a traveler with a disability
Aids and Adaptations
Many XLHers use aids and adaptations in daily life. Some aids and adaptations that may be helpful include:
- Home and workplace modifications like ramps, low thresholds, wider doorways, and lower beds27
- Assistive devices, such as hearing aids, dressing aids such as sock sliders or specially designed forks, spoons, and knives28
- Mobility devices, like canes, walkers, scooters, and wheelchairs28
Occupational therapists may be able to help a person understand the best aids and adaptations for their needs. Find resources at the links below:*
ALS Association Adaptive Equipment
- Guide to assistive products organized into categories
- Descriptions of each product
- Not all information may be relevant to people with XLH, as the material was written for the ALS community.
United Disabilities Services Foundation: Home Accessibility Checklist
- Information about different home modifications that can make it easier for a person to complete daily tasks
The National Organization for Rare Disorders State Resource Center
- State and local programs that offer free or low-cost adaptive devices for people with disabilities
Preparing for Medical Emergencies
No one wants to be involved in a medical emergency. It’s important that XLHers prepare in case the need arises and you are not able to speak for yourself.
Always carry the following information with you:29
- Name and birth date
- Rare disease alert card
- List of medical conditions
- List of current medications
- List of allergies
- Two emergency contacts
Find resources at the links below:*
The XLH Network – Rare Disease Alert Card
- Helps inform doctors, nurses, and EMTs about XLH and what they should be aware of when treating an XLHer
U.S. Department of Homeland Security – Disasters and Emergencies: People with Disabilities
- Outlines considerations for people living with disabilities when preparing for an emergency
References
- Data report from 2024 XLH Community Impact Survey and Interviews. Kyowa Kirin, Inc. and The XLH Network. August 2024.
- What is an IFSP? Understood.org. https://www.understood.org/en/articles/ifsp-what-it-is-and-how-it-works.
- What is a 504 Plan? Understood.org. Published 2024. https://www.understood.org/en/articles/what-is-a-504-plan.
- Developing Your Child’s IEP. Center for Parent Information and Resources. August 2023. www.parentcenterhub.org/pa12
- Financial Planning for Families with a Child with a Rare or Undiagnosed Condition. Tgen.org. Published May 20, 2019. Accessed February 5, 2026. https://www.tgen.org/patients/tgen-center-for-rare-childhood-disorders/stories/financial-planning-for-families-with-a-child-with-a-rare-or-undiagnosed-condition/.
- Pestaina, K., Wallace, R., & Long, M., The Regulation of Private Health Insurance. In Altman, Drew (Editor), Health Policy 101, (KFF, October 2025) https://www.kff.org/health-policy-101-the-regulation-of-private-health-insurance.
- National Cancer Institute. NCI Dictionary of Cancer Terms. National Cancer Institute. Published 2019. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/public-health-insurance.
- Medicare - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/medicare/.
- Medicaid - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/medicaid/.
- Where Can People Get Help With Medicaid & CHIP? N.d. Medicaid.gov. www.medicaid.gov/about-us/where-can-people-get-help-medicaid-chip
- Deductible - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/deductible/.
- Copayment - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/co-payment/.
- Coinsurance – HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/co-insurance/.
- Out-of-pocket maximum/limit - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/out-of-pocket-maximum-limit/.
- Centers for Medicare & Medicaid Services. Health Insurance Basics 2023. https://www.cms.gov/files/document/nsa-health-insurance-basics.pdf.
- Premium – HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/premium/.
- Prescription Drug Coverage - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/prescription-drug-coverage/.
- Health Savings Account (HSA). HealthCare.gov. Published 2019. https://www.healthcare.gov/glossary/health-savings-account-HSA/.
- Flexible Spending Account (FSA) - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/flexible-spending-account-fsa/.
- Autoimmune Association. Understanding Health Insurance Accumulators and Maximizers. Published November 19, 2025. https://autoimmune.org/advocacy/accumulators-and-maximizers/.
- Prior Authorization - HealthCare.gov Glossary. HealthCare.gov. https://www.healthcare.gov/glossary/prior-authorization/.
- Referral - HealthCare.gov Glossary. HealthCare.gov. Published 2018. https://www.healthcare.gov/glossary/referral/.
- Autoimmune Association. Understanding Step Therapy. Published November 19, 2025. https://autoimmune.org/advocacy/understanding-step-therapy/.
- External Review. HealthCare.gov. https://www.healthcare.gov/appeal-insurance-company-decision/external-review/.
- Patient Advocate Foundation. Engaging with Insurers: Appealing a Denial. https://education.patientadvocate.org/wp-content/uploads/2022/07/Engaging-with-Insurers.-Appealing-a-Denial.pdf.
- Social Security Administration. Disability | SSA. www.ssa.gov. Published 2024. https://www.ssa.gov/disability.
- Home Accessibility Checklist: What You Need To Know. udservices.org. Published December 15, 2019. https://udservices.org/home-accessibility-checklist/
- Malcolm E. Aids and Adaptations for Patients With XLH – XLH News Today. XLH News Today. Published January 9, 2020. Accessed February 5, 2026. https://xlhnewstoday.com/aids-and-adaptations-for-patients-with-xlh/.
- Hanson J. Rare Diseases and Preparing for an Emergency. RareDisease.net. Published April 6, 2025. https://raredisease.net/living/preparing-for-an-emergency.
Social Security Disability Benefits
Social Security Disability Insurance (sometimes referred to as SSDI, or disability) may provide monthly payments to people who can no longer work or whose ability to work has been limited.26 People with XLH may experience pain, mobility issues, and other symptoms that could contribute to physical disabilities.1
Learn about SSDI and find resources at the links below:*
The National Organization for Rare Disorders State Resource Center
The Social Security Administration: Disability