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Care and carers

July 19th, 2009 · No Comments

A member of the Myasthinia Gravis Association in the UK, Mr. Charles Kodua, was guest speaker at the June meeting of Sharecare Ghana.
He focused on two main topics: acceptance and care. He stressed the need to accept one’s condition, thereby allowing others to help you. Everyone struggles with “why me?” but afterwards, it is important to put oneself in the position of the caregiver and be willing to accept help. Others have the ability to “save you from yourself” and many are very willing to lend a helping hand.
Discussion ensued as members talked about their struggles with autoimmune conditions, many of which lack external cues but have significant internal ones, and finally being able to accept help.
It was agreed that the concept of disability needs to be rethought. Many individuals walk around with no external signs of disease (for example, those with diabetes and myasthenia gravis) and society is reluctant to accept that these people may have a disability. Members remarked that even when they accepted the facts of their disease, family members refused to believe that they really had a disability. One person talked about her anxiety at having to ask for a wheelchair at the airport – not for her mother, but for herself.
Along with rethinking disability, it is also important to educate doctors, dentists, optometrists, and other health care providers about signs of autoimmune conditions. Many of these disorders are first recognized by someone other than a doctor. However, with the fragmented nature of Ghanaian health care and doctors’ unwillingness to refer patients, it is imperative that everyone is educated about these conditions. Mr. Kodua disclosed that the UK Myasthenia Gravis Association has a DVD that they distribute to health professionals.
Minutes recorded by Kannie Chim

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