Caring for a Child With a Rare Disease

Reviewed by: HU Medical Review Board | Last reviewed: December 2023

Raising a child is never easy, but it can be especially challenging if your child has a rare disease. There are 5,000 to 8,000 different rare diseases that all present differently and require different treatments. The changes that come with a diagnosis – doctors' appointments, treatments, and therapies – can be time-consuming, mentally taxing, and even physically exhausting for caregivers.1,2

With help and a plan, you can successfully manage your child’s health with reasonable amounts of stress. Here are a few tips for staying afloat while caring for your child with a rare disease.

Get organized

Request copies of your child's medical records to keep at home, and purchase a file cabinet or other storage for all of your files. With records available online, that could be a digital file.3,4

Keep documentation of your child’s diagnosis, a detailed plan of care, and a list of all their medications. Having a specific place to keep all of your child’s documents will make it easier for you on a stressful day or if someone else is pitching in for care.3,4

Also, these copies can help you when you are talking to your insurance company or adding a new member to your treatment team. In case of an emergency room visit, you can have a file folder with an overview of your child’s treatment plan and medications to take with you.4

Create a team and communicate often

Communication is a top priority for your child's care team. This may include your family, medical professionals, school support, and rehab services like an occupational therapist. Sometimes a case manager is also a helpful resource. Together, all of these professionals can help you to create short-term and long-term goals for your child.5

It is important to have a grasp of what appointments, treatments, and other care are on your short-term and long-term schedules.5

Get ahead of burnout

It is not uncommon for parents to experience burnout, especially when they are juggling many support services in a short period of time. When you need therapies and home health aides, a change in routine or a canceled appointment can be tough on you.2,5

Life also happens at the same time, and if you notice yourself feeling checked out, pay attention. Rare diseases have a major impact on parents’ lives and can affect their jobs, social lives, and immediate family. That includes your other children.2,5

Pay close attention to the signs of burnout, which can include:6

  • Tiredness
  • Frustration
  • An overall negative attitude toward taking care of your child
  • A decline in your own mental and physical health

It is important to ask for help, even if that means seeking a therapist to sort through your feelings.

Find support

While it is not impossible to find a support system, it can be difficult at first. Single parents may lack the built-in help of another parent and another source of income. Seek outside help and look for resources depending on where you live.7

This could be friends and family who can assist you when you’re sick or help with your other children. Or, it could be a support group that gets what you’re going through. Online support groups can help you discover new treatment options and clinical trials. At the very least, you won’t feel so alone knowing that someone else understands exactly what you’re going through. There may be groups on social media, and many organizations, like the Rare Diseases Clinical Network, offer resources to find support.8

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