Having Lipoprotein Lipase Deficiency or one of the related conditions that comprise Familial Chylomicronaemia Syndrome can be very isolating.
Few people will have heard of the condition (although LPLD Alliance is working hard to make that change) and even when told most cannot grasp the enormity of the effort that needs to be made in order to keep well. It is also hard to understand the impact that this has on the individual’s life and on the lives of those around them.
The lack of understanding and support can increase the sense of isolation. Fortunately, with the growth of the internet has come the growth of online supportive communities which can be used by people from anywhere in the world.
These online communities can benefit people with ultra-rare conditions particularly as it can be difficult to find others with the same condition, and when found the geographical distance can be insurmountable.
Online communities are also useful as contact with other individuals with the condition can be as much or as little as is wanted! They can be a good place to get and give support, and to share tips and experiences about managing the condition.
LPLD Community on RareConnect The first online community for LPLD.
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
FCS support group is based in the USA and is accessed through the Living with FCS facebook page
If you would like to meet others with the condition in person we will try to connect you, please email us here.
This photo was taken at the Patient Advisory Board on behalf of Akcea Therapeutics, held at the St Pancras Hotel in November 2015.
For most of us pictured, this was the first time we’d met someone else with the condition.