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Hello @lynnelliott7, Welcome to Connect. I did a search of Connect and was not able to find another member with the specific diagnosis of Central Core Disease (Myopathy). Here are a few references that may help provide more information for you on the condition.
-- Central core disease: https://rarediseases.info.nih.gov/diseases/6014/central-core-disease
-- Central core disease/malignant hyperthermia susceptibilty: https://www.mda.org/disease/congenital-myopathies/types/central-core-disease
@jlw started another discussion on Non Specific Myopathy here - https://connect.mayoclinic.org/discussion/non-specific-myopathy/ and may be able to share some information with you.
Did your husband enter a clinical trial for Central Core Disease? Are you able to share a little information about the research program?
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Thank you so much for the information, John. It was very informative. My husband is involved with the Rare Genomes Project. Typically, the results take 6 months to finalize. We were told it should be sometime this summer.
His muscle weekness along his spine has become worse recently and he compensates by bending forward while experiencing shortness of breath only when walking. He can bike and kayak without symptoms as he is sitting for both. I would appreciate all information in respect to this issue. Thank you!