Care and carers

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

Dr. Osei-Poku at Sharecare meeting

The meeting started with introductions of new members. Dr. Foster Osei-Poku, neurologist-in-training at the Korle-Bu teaching hospital began with a definition of autoimmune diseases, which he described as the body “directing its bullets against itself.” He listed examples of autoimmune diseases and said some people are predisposed to them at birth.
Members had several questions for Dr. Poku. Some of which were:
Q: It’s frustrating that many doctors can’t diagnose these conditions. How do you bring up the fact that the condition is neurological with them?
A: We have to create awareness among doctors about these conditions.
Q: There are doctors who have never heard of these conditions. Where do we start?
A: These diseases have come to live with us and are increasing. They need continued medical exploration. We need to organize seminars to educate doctors.
Q: Who diagnoses these type of conditions?
A: The neurologist can make the diagnosis and refer you to the neurosurgeon. Structural problems are taken care of by neurosurgeons.
Q: Do medicines re-grow nerves?
A: In some cases. If just the sleeve of the nerve is destroyed, it can re-grow. If the nerve is dead, it can’t, so it’s good to catch the condition early.
Q: If you’re told there’s a 50-50 chance of survival, what do you do?
A: I look at the age of the patient. For instance, I ask if it’s worth putting a 70-year-old patient through the risk of anaesthesia. I have to make sure the benefits of surgery outweigh the risks.
Dr. Osei-Poku talked about one of his nieces who always felt weak. Eventually, her condition was diagnosed as myasthenia. Her thymus gland, which sits in the upper chest, was removed. The thymus gland is the mother of all immune cells.
Q: Does the thymus gland apply to all autoimmune conditions? Can it be dealt with like breast cancer—in families with histories of autoimmunity, should the gland be removed?
A: We’re still not sure. It’s better to remove it in teenagers, but it also depends on the risk of transmission and the family history.
Q: Some doctors give you medicines with all sorts of side effects, such as Lyrica. What do we do?
A: For most of these conditions, the first line is the steroid, but it has several side effects: moon face, fat pad, diabetes, hypertension, and even a month of use is enough to show these. And in most cases, you need high dosages to achieve results. We try to lower the dosage to the smallest possible dose to control the disease.
Q: I became paralysed after going into surgery. I question my decision everyday.
A: Don’t blame yourself for that decision. We can’t predict who will regress or improve, it’s like going into a business. But it also comes down to will—the will to get better.
The group agreed that Sharecare organize a desensitizing seminar for doctors. The meeting ended at 12:30 pm.
Minutes recorded and submitted by Ayesha Harruna Attah.