On September 27, 2024, the 10th medical day of the Société Libanofrançaise d’Endocrinologie et de Diabétologie (SOLFED) took place in Lyon, France. The event featured discussions on key health issues, including obesity, diabetes, and homozygous familial hypercholesterolaemia (HoFH). A presentation on HoFH by endocrinologist Dr Magda Zaarour highlighted the complexities of diagnosing and treating this rare condition. During her talk, Dr Zaarour also introduced organisations raising awareness about HoFH, including the FH Europe Foundation, with two of our Patient Ambassadors sharing their powerful testimonies.
Chyrel Lichaa's advocacy efforts in Lebanon
Chyrel Lichaa, a HoFH patient from Lebanon, shed light on the significant challenges HoFH patients face due to Lebanon's ongoing economic crisis, particularly the lack of access to critical treatments like LDL apheresis filters. Despite these difficulties, Chyrel has been a fierce advocate for patients, leading a campaign that reached hospital administrators, national key opinion leaders, government officials, and the Ministry of Public Health. Her tireless efforts aim to underscore the importance of patient advocacy in improving healthcare access. Chyrel’s impactful work will be further highlighted when she presents her abstract on this topic at the IAS Symposium in Oman this December. She emphasised the need for strong patient organisations, especially in the Middle East, to support individuals in their daily battles with this condition.
Maria Nassif’s Experience with LDL Apheresis in France and Lebanon
Maria Nassif, a HoFH patient originally from Lebanon but now living in France, shared her personal experience with LDL apheresis in both countries. Maria noted a significant difference between the treatments, explaining that the slower apheresis process in France allows for more efficient cholesterol removal, resulting in lower LDL-C levels. Interestingly, both procedures use the same machine, but it was scientifically proven that a slower blood flow through the filters yields better outcomes. Maria also shared images showing how xanthomas on her knuckles disappeared after just two years of treatment in France, illustrating the effectiveness of consistent, high-quality care. Her journey inspired her to join the FH Europe Foundation, where she now advocates for the sharing of best practices around LDL apheresis.
At FH Europe Foundation, we are proud of our patient ambassadors, Chyrel and Maria, for their courage, advocacy, and dedication to improving the lives of those affected by HoFH. Their stories highlight the importance of patient advocacy and international collaboration to advance treatment options and raise awareness for this rare condition.