Being a caregiver for a child with Sanfilippo syndrome can often be stressful and taxing. Studies have shown that caregivers for Sanfilippo syndrome patients report a significant reduction in quality of life, as well as increased anxiety and depression.
As a caregiver, it’s important that you prioritize your own health and mental well-being. There is currently no cure for Sanfilippo syndrome, so caring for a child with the disease can be like running a marathon. So, like in a marathon, you have to pace yourself and build your mental reserves and physical strength.
Here are some self-care tips and recommendations that may help you as care for someone with Sanfilippo syndrome.
Get enough sleep
Sanfilippo syndrome may mean that your child does not sleep through the night. If they can’t sleep, chances are you can’t either. Moreover, if you are taking care of your child everyday, you’re probably pushing off other daily tasks until they are asleep. If so, you may be sacrificing your sleep and running on a sleep deficit. Going without adequate sleep and feeling tired make it hard to get tasks done, and the cycle of sleep deprivation continues.
If your child has sleep disturbances, try to set up a nighttime schedule with your partner, other family members, or paid caregivers — stagger sleep schedules, or alternate nights so that everyone can get the rest they need.
Avoid things that make it hard to sleep, such as caffeine, alcohol, and nicotine. Find ways to reduce stress and anxiety, such as meditation or yoga, for a more restful sleep.
Eat healthy foods
Taking care of yourself can be difficult when you are caring for someone else. Shortcuts to save time, such as eating unhealthy junk food, may be tempting but your own health has to be a priority. Healthy eating is an important part of self-care. It’s a good idea to talk to a registered dietitian, who can help you ensure that you (and your child) are getting the needed nutrition.
Regular exercise is important for your physical, emotional, and mental health. Getting even 15 or 30 minutes of gentle exercise each day can make a difference in your sense of well-being. Try to incorporate exercise into your daily routine.
Practice mindfulness and meditation
Life can feel overwhelming when you are caring for a child with Sanfilippo syndrome. Mental exercises like mindfulness and meditation can help reduce stress and improve your mental outlook by helping you focus on what you are feeling in the moment.
Connect with friends and family
It’s easy to feel disconnected from friends and family. You may feel like you can’t talk about what you’re going through with people who aren’t in the same situation, but it’s important to reach out to others and build a support network. Try to make time to meet or talk with friends or family every week. If you do not have friends and family with whom you feel connected, consider reaching out to a structured support group.
Last updated: July 21, 2020
Sanfilippo Syndrome News 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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