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Managing an infant with FCS
Known among patients as ‘fat spots’ these are fatty growths under the skin. They appear as raised, reddish-yellow bumps or nodules and are usually found on the buttocks, knee and outer arms. Usually they measure around 1mm but they can form clusters and grow together to form larger lesions. They are not usually painful or tender unless they are on an area of the body where they are constantly knocked or rubbed. They can be itchy.
Xanthomas usually appear within a few days after triglyceride levels are increased (each patient will have their own ‘tipping point’). They may contain a greasy, yellowish substance and sometimes a milky fluid.
If triglyceride levels decrease xanthomas will disappear over the following weeks and months. Persistent xanthomas indicate that triglyceride levels are too high and attention should be given to the diet.
Caring for someone with FCS
As well as the physical symptoms, patients with FCS can also experience many cognitive and emotional symptoms. Poor memory, memory loss, difficulty with problem solving, lack of concentration and 'feely wooly'. Feelings of fatigue (beyond feeling 'very tired') are also frequently reported.
Managing the restrictions imposed by FCS can be very stressful. Many patients become depressed and many feel socially isolated.
Patients are at risk of eating disorders. Many report fasting for several days to manage pain, others report self-induced vomiting to avoid digesting any food eaten with a high fat content. This can escalate to bulimia.