My nephew was diagnosed with HoFH a few years back. He is 6 years of age. Currently he is having aphaeresis to lower the levels of his LDLs, which with just medical intervention (statins, ezetimibe) was in the mid-high teens, now is around 5.4 due to aphaeresis . So long term wise this seems an effective course for management until newer drugs are available for more effective treatment.
The issue we are facing is the consultants we are under want the child to have a liver transplant which will in their opinion drastically reduce his levels and keep them that way for decades. Now a liver transplant has its own complications and he will have to be on immunosuppressants for life. HEART uk charity have given their statement with regards to HoFH, and recommend a safer approach with aphaeresis and meds rather than a liver transplant.
I would value any piece of advice and guidance as in what other peoples opinions are.