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Tracking your symptoms

Fabry disease can be monitored through a variety of laboratory tests and assessments.1 It is important to remain aware that clinical vigilance and regular monitoring are essential, as an absence of symptoms at baseline or at follow-up assessment does not preclude subsequent development of organ complications.2 

If your symptoms change or if they begin to occur more often or more severely, you should share this with your doctor. 

How the members of your care team can help you

Treatment and follow-up assessments to evaluate treatment responses should ideally be supervised by a physician experienced in the management of patients with Fabry disease, with input from sub-specialists who also have Fabry disease experience.2 This multidisciplinary clinical team may include a neurologist, nephrologist, cardiologist, medical geneticist, genetic counselor, psychologist, and nurse.2 

It’s important to remember that your care team is there to help you so you can always ask as many questions as you need to. 

Tracking your symptomsTracking your symptoms

References:  

  1. Martins, AM, et al. The Journal of pediatrics. 2009;155(4): S19-S31. 
  2. Ortiz A, et al. Mol Genet Metab. 2018;123(4):416-427.

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TIPS FOR CAREGIVERS

Taking care of someone with Fabry disease, whether it's your child, partner or a friend, can be demanding and emotionally exhausting. It is therefore very important to look after your own health and well-being. The following tips on taking care of yourself may help.

Find ways to de-stress1-3
Find ways to de-stress

If you find it hard to de-stress, it might help to explore activities that help you to relax. You could try exercises such as meditation or yoga or even having dinner with a friend. It doesn’t matter what activity it is, just find out what works best for you.

Set realistic expectations and boundaries4,5
Set realistic expectations and boundaries

Set realistic expectations and goals for yourself and your loved ones. Learn to say ‘no’ to requests or activities that are too much for you.

It’s ok to ask for help5
It’s ok to ask for help

Make a list of chores that others could help you with. Then ask a friend or family member to pick an item from the list to help you with. It could be anything from picking up groceries, a pharmacy prescription or cooking a meal.

Join a caregiver support group4,5
Join a caregiver support group

You may find encouragement by sharing experiences with other caregivers, as well as be able to discuss how to overcome certain challenges. It will also allow you to create new connections with people who know what you are going through.

Take care of your health6
Take care of your health

Try to get plenty of sleep (7-9 hours depending on how much sleep you need6), maintain a healthy diet and try to find time to exercise regularly.

Visit your doctor5
Visit your doctor

Make sure to get all recommended screenings. Tell your doctor you are a parent/caregiver of someone living with Fabry disease and discuss the symptoms you are experiencing (if any).

Disclaimer: Rethink Fabry is not a substitute for instructions or advice from your doctor. Always discuss any questions or concerns about medical conditions with your doctor or other healthcare professional’s advice.

References:  

  1. Self-care for caregivers', Cleveland Clinic, https://health.clevelandclinic.org/self-care-for-caregivers/. Accessed July 2025.
  2. ‘Caregiver Isolation and Loneliness’, Family Caregiver Alliance, https://www.caregiver.org/news/caregiver-isolation-and-loneliness/. Accessed July 2025.
  3. ‘Tips for Fabry Disease Caregivers’, Fabry Disease News, https://fabrydiseasenews.com/health-insight/tips-for-fabry-disease-caregivers/. Accessed July 2025.
  4. ‘For Caregivers & Friends’, Mindfully rare, https://www.mindfullyrare.com/fabry/for-caregivers-friends. Accessed July 2025. 
  5. ‘Caregiver stress: Tips for taking care of yourself’, Mayo Clinic, https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784. Accessed July 2025.
  6. Chaput J, et al. Nature and Science of Sleep 2018;10:421–430.

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Patients & Caregivers: In case of need to report an adverse drug reaction, please refer to your physician, asking him to fill in and submit the relevant case report to the concerned Health Authority, according to the Pharmacovigilance requirements in force in your Country. Nevertheless, please be kindly reminded that each patient can report any such cases directly to the national reporting system.

 

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