Care for
yourself as
you would

Care for
yourself as
you would

People living with Fabry disease often need extra help from a caregiver to face the challenges of the disease.
While the physical symptoms of Fabry disease may be easy to see, the less obvious effects are often on mental health. People with Fabry disease may feel sad, anxious, or overwhelmed, and may need to lean on you for support. It’s important to know that whether you’re caring for someone with Fabry, a mental health condition, or both, you are not alone. Many family members and caregivers are going through the same thing you are now.
Living with Fabry disease is stressful.
People with Fabry disease and their caregivers might struggle with stress, anxiety and depression. In addition to coping with symptoms and complications, it can take years of tests just to get a proper diagnosis. It can also be stressful to learn that the disease will worsen over time. This can put a real strain on relationships and daily family life. As a family member or caregiver of someone with Fabry disease, you need support as well.
Maurice and Reina

"Ask for help. It’s okay to say you’re not okay."

Humans are social creatures. How do you connect with others?
Select the most relevant answer to you, and see how that compares to other responses:

How caregivers can care for themselves:

  • Connect with a support group or trusted mental health professional

  • Learn to say "no" to things that you can't feasibly do, or to activities that are overwhelming

  • Find activities that are inspiring and bring you joy

  • Explore relaxation techniques and find what works best for you

  • Connect with nature, spend time with pets, or make time for your favorite hobby

  • Set realistic expectations for yourself and loved ones

  • Never give up hope

family conversation

Caring for someone with Fabry disease requires the entire family to work together as a team.

If your family struggles to communicate effectively, it can make daily activities more difficult, and may take a toll on relationships between spouses, significant others, parents and children, and siblings.

Poor communication can lead to serious tension with extended family members.

Effective communication is about more than just exchanging information. It’s about understanding the emotion and intention behind the information.

Here are some tips for improving communication:
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Be clear about expectations.

As primary caregiver, you may have become competent in your role. Explaining information clearly to other family members can set expectations and avoid conflict.

dialogue icon
Use “I” statements.

Be mindful of the words you use when communicating with your family. Share your feelings and needs without being critical of the other person.

family patience icon
Be patient with extended family.

If a relative says something offensive or if their method of helping falls short of your needs, try not to respond in a negative way.

self care

Make time for self-care.

One of the best ways to improve your ability to cope with challenges and maintain your health is to practice self-care. In order to provide excellent care to your loved one, you must continuously prioritize caring for yourself. Ask for help, make time for social activities, lean on friends for support, and surround yourself with positive people. 
You are worth it.

help icon

Find support online or in your area.

Call the NAMI HelpLine at 800-950-6264 or text “HelpLine” to 62640