Familial Chylomicronaemia Syndrome (FCS) Awareness Day

Today 2nd November is Familial Chylomicronaemia Syndrome (FCS) Awareness Day. The LPLD Alliance are raising awareness of FCS by tweeting facts and information about FCS and its impact.

Guts UK are keen to support this work because people with FCS are more at risk of developing pancreatitis. A small number of people who suffer from attacks pancreatitis with unknown cause could have undiagnosed FCS.

The LPLD Alliance

LPLD Alliance are a charity working on behalf of people affected by Familial Chylomicronaemia Syndrome (FCS).

What is FCS?

People with FCS can’t digest the fat that they eat, which then travels around their blood stream making it milky white and causing the symptoms of FCS which includes pancreatitis, which can be life-threatening and can lead to chronic pancreatitis and pancreatic damage.  Other symptoms include abdominal pain which can be severe, fatigue and ‘brain fog’ – problems with memory and concentration.

There is no medication currently available for people with FCS other than eating less than 20g fat per day although some patients find they need to eat closer to 10g fat to manage their symptoms. Some find themselves in pain or with pancreatitis even following these restrictions.  The diet is extremely difficult to manage and makes eating a stressful experience for the individual and all those around them. People with FCS have high levels of depression and social isolation.

The risk of developing diabetes is greater for people with FCS, either as a result of a high sugar, high carbohydrate diet compensating for the lack of fat, or due to damage inflicted on the pancreas from many episodes of pancreatitis.  Diabetes increases the dietary restrictions for people who have both conditions.

Pregnancy can be complicated as fat levels rise naturally in the third trimester and for women with FCS they can rise to extremely high levels.  This increases the risk of pancreatitis which can be dangerous for both the mother and her unborn child.

What does the LPLD Alliance do?

LPLD Alliance works to raise awareness and educate about the condition, supports people affected by it, and advocates for excellent care and access to new medicines.

Find out more about the LPLD Alliance by visiting their website www.lpldalliance.org, follow their Twitter account @LpldAlliance or find them on Facebook LPLD Alliance, or contact them directly by emailing jill@lpldallilance.org

Share the LPLD Alliance FCS Awareness Day banner to help them raise awareness of the condition: