Living with FCS can be very isolating. There is little support available to people struggling to manage the severe restrictions the condition imposes and its symptom burden, and little understanding of the impact that the condition has on the lives of all those affected by it.
In the absence of any therapeutic help available, patients and those close to them, have found that connecting with each other can be an important part of breaking the isolation that this lack of understanding creates, and sharing tips and strategies can help to break the social isolation that the severe dietary restrictions impose.
A study undertaken by Ackea Therapeutics found that patients who had connected to other patients felt more postive about their overall health and emotional well-being compared with the period before making these connections. Patients who actively engaged with other patients showed much higher motivation in managing their own health. You can read the study here
There are a number of online support groups you can access.
LPLD Community on RareConnect The first online community for LPLD/FCS. This has a global reach.
There are also two closed facebook communties, one is based here in the UK and one in the USA.
LPLD discussion community is based in the UK and accessed through the LPLD Alliance facebook page @LPLDAlliance
FCS support group is based in the USA and is accessed through the Living with FCS facebook page @Livingwithfcs
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