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Anyone else here with AApoAIV (Apolipoprotein A-IV) Amyloidosis
Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (6)Comment receiving replies
AApoAIV (Apolipoprotein A-IV) amyloidosis is an extremely rare form of systemic amyloidosis, often presenting as a rare cause of cardiac amyloidosis. Studies suggest it represents a very small fraction of cases, with one, this JACC study, identifying AApoAIV in only 0.6% (13/2096) of surveyed cardiac amyloidosis cases.
It also affects the kidneys and intestines.
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@shookercooker , I just happened upon this group. I was diagnosed with AAPO AIV amyloidosis in 2021 through biopsy after having a partial nephrectomy on left kidney due to renal cell carcinoma. I knew something wasn’t quite right after surgery, however, was shocked and scared to get this diagnosis . It affects my kidneys, duodenum, and nervous system. My heart hasn’t been affected, although I have cardiac issues. The frustrating part of this disease is that I don’t know any more about it today than I did 5 years ago! There is little to no information on this particular for of amyloidosis.