Hello! I would love to connect with others that have familial hypercholesterolemia and/or recieve apheresis treatments. I have an APOB gene defect that has caused premature cardiovascular disease, FH confirmed by genetic testing and a heart cath last year at age 52. I have always had high cholesterol and my doctors flipped a switch to be aggressive to treat it once new drug options (PCSK9 inhibitors) became available. I have since run through all medical options and currently am not treating. My highest untreated LDL has been around 300. I am scheduled to begin LDL apheresis next week. I’ve had such wonderful care at Mayo since 2006 figuring this out and I am so thankful for everyone that has been a part of my care team there. It is not practical to drive to Mayo every other week for treatment so I was referred to a clinic closer to me. I am told that apheresis not only reduces cardiac crisis risk but will also reduce fatigue and stress on my body that I haven’t really recognized since it’s been with me since before birth. My struggle is to manage progression of buildup in my arteries while I maintain my mental health and remain active. It has been super isolating and has included working through a fibromyalgia diagnosis as part of this. My hope is apheresis will be a magic bullet for me.

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