Get educatedLearn as much as you can about FD, including its symptoms, progression and treatment. This can help you better understand what your loved one is going through so you can provide more effective support. Click here for websites where you can learn more about FD.

Assist with daily activitiesDepending on the severity of your loved one’s symptoms, they may need help with everyday tasks like cooking, cleaning, shopping or babysitting. Be willing to lend a hand or source outside help if needed.

Help with appointments

People with FD often have a large healthcare team, which translates into a lot of appointments! You can provide support by keeping track of appointments and accompanying your loved one if they want you to. Providing transportation to and from appointments can also be extremely handy.

If your loved one is happy for you to be present during an appointment, you can take notes so that what is discussed with healthcare professionals can be referred to later.

You can also help your loved one to monitor their symptoms and remind them to share this information when they see their doctor.

Provide a listening earPeople with FD may experience a range of emotional and psychological challenges, including anxiety, depression and social isolation. Being there to listen to their concerns, and offer support when needed, can be a tremendous support.

Access support groupsThere are several support groups for people with FD and their families. Encourage your loved one to connect with others who understand what they are going through and can provide emotional support. You can search for support groups via social media. For example, Fabry Australia is on Facebook: www.facebook.com/FabryAust/.

Be a supportive manager

• Be flexible with hours: Your team member with FD will need to attend regular medical appointments. Offer flexible work hours so they can attend appointments.
• Be flexible with location: If working from home is a viable option in your industry, suggest that your team member works from home on days that they need to. This will help them with managing both their symptoms and appointments.
• Create comfort where possible: Many people with FD are sensitive to environmental conditions such as extremes of heat and cold. Ask about the temperature requirements of your team member and, where possible, accommodate for this.

Above all be understanding. When it comes to chronic illnesses such as FD, there will be ups and downs. Be aware that someone with FD will have good and bad days, and may need more support at certain times.