Maria Müller

Diagnosed with AL amyloidosis in June 2022

Heart, Plural Effusion, GI Tract, Tongue, Saliva Glands, Balance, Hearing Loss, Blocked Lachrymal Duct, and autonomic nervous system damage.

Six years to diagnosis.

Treatment was 18 months CyBorD and 11 months low dose Melphalan and Prednisone.

My message for clinicians: 

• Do a light chain assay.   

• A differential diagnosis that considers rare diseases is crucial. 

•  Look out for macroglossia, skin issues, and complaints about swallowing problems,

• Monitor bone density

• Multi-disciplinary supportive care like cardiology, respiratory, physio, dietary advice, and for a long time after chemotherapy.

My full story will follow soon