Ask a typical Ghanaian this simple question on a good day: “Charle, how is life?” The answer is very likely to be: “I’m managing.” This response comes without any explanation whatsoever about the nature and extent of the management. So it appears that in Ghana, the farmer is managing. The accountant is managing. The labourer is managing. The student is managing. The desperately poor are managing. The MP is managing. Even the manager is managing. We are all managing. This probably makes ‘managing’ very Ghanaian; or so you would think.
So when I attended a conference this week on the achievements of sickle cell disease patients, the big thing that hit me is that management should also be applied to diseases like sickle cell. With effective management, the focus shifts from the disease to the person. Despite any aches suffered by a sickle cell patient, and in spite of disability, a patient who manages his/her disease well can live a long and productive life to achieve his/her full potential.
During the conference, I heard sad stories, but I also heard powerful stories of hope from sickle cell patients who have accomplished more with their lives than some of us who claim to be ‘normal.’ Sickle cell patients are the ones we call SS, or what the internationally renowned sickle cell expert, Dr. Konotey-Ahulu, refers to as ACHEACHE. Yes, the stereotype is that the SS patient is literally cursed to live a life of pain. Fact: pain is not fun; pain gets in the way of productivity.
But there is another school of thought. If managed well, sickle cell should not be a pain sentence. Several of the participants who shared their stories said it better than I ever could. I therefore reproduce below, the full text of a speech delivered by Mrs Mary Klufio, a sickle cell disease patient who has lived a long and productive life in spite of the disease.
She is a 64 year old mother of three. Enterprising, she worked at CFAO Multi Stores, advancing to senior management position, the first woman to do so. She did all that and more through effective management of sickle cell disease. Anyone can.
Please share this information with anyone you know who suffers from pains because of sickle cell disease. Remember, knowledge is power. Without knowledge, the people perish! So hear her!
“Like so many sickle-cell patients, I am a living proof that we can live with the disease and still achieve our dreams. That is not to say that the disease should be taken lightly, because it can be debilitating and can cause death. I know that all too well because I have come very close to death myself and only last Friday, I buried my 36-year-old nephew who was a sickle-cell patient. But, the good news is that the disease can be managed. Like every situation, if it is managed, the results can be good.
“I am a business-person and I know that to run a successful business you have to put certain regulations in place. Some of these may be difficult to follow, but there is no easy way out. So it is with this unfortunate and painful disease. As sickle-cell patients, we can live a normal, healthy life if we look after ourselves well, that is, if we adopt the correct lifestyle.
1. We must learn to listen to our bodies and respond accordingly because a crisis almost always gives us enough warning before it manifests. In my case, an ache along the spine is enough warning. I did not know this when I was growing up, so I had numerous crises that could have been avoided.
2. Research done on the disease by well-renowned physicians and hematologists has shown that while the weather can affect us, we do not have to suffer pain anytime there is a change in weather. To reduce our chances of falling ill in cold weather, we must keep ourselves sufficiently warm. In hot weather, we should be careful not to overexpose ourselves to the heat.
3. We must regularly visit our doctors or sickle-cell clinics even when we feel well. We must report to them as soon as we start feeling the symptoms of a crisis coming on. If we get to the clinic early enough, the crisis can be managed and most probably minimized.
4. We should take our prescribed medicines for life; or at least until a cure is found for the disease.
5. It is imperative that our daily fluid intake be consistent with what doctors prescribe: at least three liters of water a day. We must take note of how much we are drinking daily. For example: it helps to drink from one bottle and finish that before taking another so that at the end of the day, we may know the exact volume of water we have drunk. We know we are drinking enough water if our urine does not appear concentrated.
6. From my experience, stress, fear, anger, anxiety and extreme excitement are all enemies of the disease. But how can one go through this crazy world without falling prey to some of these emotions? We must learn to control the triggers. Since excessive physical exertion and hard manual labour can be triggers, we must exercise in moderation.
7. Education that can help us secure appropriate jobs is very important for people with sickle cell disease. I am grateful to my parents and doctors, especially Prof. Felix Konotey-Ahulu, for motivating me to obtain a university degree even as I struggled with the disease as a young woman. I have friends and acquaintances with sickle-cell disease who, by virtue of their education, have achieved even more that I have.
8. I have learnt over the years that we need a lot of support from family, friends and colleagues, especially when we are in crisis. These are people who can tell us when we do not look well or remind us to take our medications, etc. This is an important aspect of the management of sickle cell disease. I go into crisis whenever I do not heed my husband’s advice to slow down or rest.
9. Last, but not the least is the power of faith. People sometimes feel uncomfortable at the mention of God’s name. I do appreciate that this a scientific conference, but, as I am sharing my personal experiences, permit me to state that faith in and prayers to God have helped me, my family, my friends and maybe my doctors to manage my condition. I still remember my parents praying for me when I had crisis as a child.
In January 2003, when I had a major crisis and was in a coma for two weeks, family, friends and doctors offered and solicited prayers from all over the world for me to get better, while I was being treated by excellent physicians. If you have faith that the good Lord is taking care of you in addition to all the medical and personal care you are receiving, you, too, can be at peace with your condition and rise above it.”
dorisdartey@yahoo.com
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