Published: April 16, 2024

Patient Story: Living with FCS in Estonia

The youngest FCS Ambassador advocating in Estonia 

On 14th April, our youngest patient ambassador, Elisete Poobus (6 years old), along with her family, was invited to the 30th Anniversary conference of the Estonian Phenylketonuria Association, to provide an insight into living with FCS (Familial Chylomicronaemia Syndrome). 

 Elisete’s mother, Teevi Poobus, gave a short presentation explaining how Elisete was first diagnosed and how they, as a family, dealt with this news. She also spoke about the symptoms associated with FCS, and the strict diet Elisete must follow. Patients with FCS are restricted to a maximum of 20g of fat per day, while for Elisete at 6years old, its just 5g!!! This includes ‘good’ fats such as nuts, seeds, avocado, olive oil. 

 During her presentation, Teevi also gave huge thanks to the healthcare professionals in the hospital that treat Elisete and those who have supported her family on this journey. Teevi said that “although it is Elisete with the diagnosis, it feels like it is my own too”.  

 There is no patient organisation in Estonia for people with FCS, so the family struggled to find support and had to deal with government bureaucracy alone in an effort to find help.  

 In 2023 Teevi found FH Europe Foundation, which already had a supportive group of people across Europe and the US living with FCS. In November Teevi and Elisete were invited to Amsterdam for the FH Europe Foundation annual conference, where they were able to unite with other FCS patients. Although Elisete was the youngest among them, she was comfortable with all the attention and rocked her moves on the dance floor! 

The positive outcome of Elisete's and her mum's advocacy work at the April meeting has been an offer to help the Poobus family get FCS recognised in Estonia as a condition that needed urgent support. Fingers crossed it works out this time!  

Prepared by : Teevi Poobus, FCS Ambassador from Estonia

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