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Living With Autoimmune Neutropenia and AA Amyloidosis: Ramona’s Story
The Story of Ramona
RARE DISEASE DAY
Living with Autoimmune Neutropenia and AA Amyloidosis
On the occasion of RARE DISEASE DAY I’d like to share a few words about me. I’ve been coping with AUTOIMMUNE NEUTROPENIA at least since 2008 when a simple bloodwork showed very low leucocytes and especially low neutrophils. For the ones that aren’t aware of this rare blood disease AUTOIMMUNE NEUTROPENIA (and also chronic severe neutropenia and cyclic neutropenia) is a serious disease part of IMMUNODEFICIENCIES which puts you at risk for severe recurring infections. My neutropenia is chronic (lasting for many years), autoimmune because I have ANCA antibodies which destroy my neutrophils and also severe as my neutrophils are less than 500 per microliter.
It is a condition that makes you always be on the lookout for infection. Things that for others are natural for neutropenic patients imply careful consideration: like hanging out at indoor closed places like theaters and malls (during influenza season), like having a tatoo, or swimming in a lake….It may seem exaggerated but I assure you it’s not.
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