Social Activities for HoFH

With everyone’s expectation, the first social activities for Homozygous Familial Hypercholesterolemia was finally held in April. Although the current patients were few in number, there are still 3 patients who came from Taichung this time. One family even brought their grandparents together, only hope to learn more about diseases through social activities.

This time, we invited Professor Niu-Daoming, director of the Genetic Counseling Center in Taipei Veterans General Hospital, to share the current homozygous medicine and treatment. Niu individually inspected the patients' cholesterol and medication conditions, and gave them appropriate advice. There were two young patients this time, therefore he also checked for xanthomas caused by cholesterol precipitation.

Later, afternoon tea was delivered to the classroom. Because they can barely eat oily food, fresh fruits were prepared for the patients. One patient’s mother shared a xanthelasma was found on her first born child’s ankle, and soon was diagnosed with Homozygous Familial Hypercholesterolemia, and the second born was also diagnosed the same. Therefore, they have bland food at home. It’s amazing and impressed that older brother can face many temptations with just a little bite.

The patients’ families talked endless experience in this first gathering. They all hoped to learn more methods about taking care of their children from other families. We thank all for coming and will look forward to gather in the future.

Translator: Angela Ou Yang (Thrombasthenia), Reviewer: Joy Yin