LPLD Alliance is a charity working on behalf of people affected by Familial Chylomicronaemia Syndrome (FCS). The first Friday of November is Familial Chylomicronaemia Syndrome awareness day.
What is FCS?
People with FCS can’t digest the fat that they eat. This fat travels around their bloodstream making it milky white and causing the symptoms of FCS. Symptoms include pancreatitis, abdominal pain which can be severe, an enlarged liver and spleen, fatigue and problems with memory and concentration (often known as ‘brain fog’). Pancreatitis attacks can be life-threatening and can lead to chronic pancreatitis and permanent damage to the pancreas.
There is no medication currently available other than eating less than 20g fat per day, with some patients needing to eat closer to 10g fat to manage their symptoms. Even following these restrictions some individuals find themselves in pain or with pancreatitis. The diet is extremely difficult to manage and makes eating a stressful experience for the individual and all those around them. People with FCS experience high levels of depression and social isolation.
The risk of developing diabetes is also greater for people with FCS and patients with both conditions have even greater dietary restrictions and increased symptom burden.
Pregnancy can be complicated for women with FCS: fat levels rise naturally in the third trimester and for women with this condition, 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 and can make for a very stressful pregnancy. The recommended fat intake is reduced to less than 2g fat per day. In certain cases, women also develop gestational diabetes making pregnancy management even harder.
What do we 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 us by visiting our website www.lpldalliance.org, follow our twitter @LpldAlliance, find us on Facebook LPLD Alliance, or contact us by emailing [email protected]