← Return to Inclusion Body Myositis: I'd like to talk with others

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@becsbuddy

@kentyunker Thanks for your interest. I have a rare, and newly discovered, disease called CLIPPERS. It stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. I was SO lucky to find a neurologist who had heard of the disease because none of the local doctors had. With high dose steroids my brain came back, but I needed a month of rehabilitation. I now get twice yearly infusions of rituximab, a monoclonal antibody . It’s been a long road..... As a retired nurse, I’m now trying to help others

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Replies to "@kentyunker Thanks for your interest. I have a rare, and newly discovered, disease called CLIPPERS. It..."

Wow! Not surprising that a former caregiver such as you would think of others while suffering! You are a special person! You are an encouragement! The world needs more of people like you!

My prayers and best wishes are given for you!