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{
"id": 905171,
"url": "https://info.mzalendo.com/api/v0.1/hansard/entries/905171/?format=api",
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"type": "speech",
"speaker_name": "Sen. (Dr.) Zani",
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"speaker": {
"id": 13119,
"legal_name": "Agnes Zani",
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"content": "the shape of a sickle. The sickle refers to the equipment that is used to cut grass. When it happens, it configures the whole system within the body, which then brings about sickle cell disease. Most of these patients are also afflicted with high levels of pneumonia, which make it difficult for them to move from time to time and place to place. I have friends, relatives and acquaintances who have children with sickle cell disease. All the time, they speak about trying as much as possible to get them to live to the highest number of years that they can. One woman, the oldest patient, lived to 50 years. So, it is possible. Madam Temporary Speaker, what are we doing wrong? One of the things that we are doing wrong is that we are not very consciously advocating for this disease and talking about it, and trying to find ways and means of coming up with solutions. I saw an experiment on television of a particular case in a country, where they said there is a lot of hope. For the Kenyan scientists, I guess there is also progress which can be made. The easiest is a blood transfusion if you have a sibling. However, in most cases it only works if you have a twin. If you have a twin, then chances of a match are higher. When there is no twin, it creates a big problem. The problem is when it is associated with anemia and a lot of pain where a person cannot go to schools. Therefore, social outcomes will be affected, for example, occupation, education and social mobility. This creates quite a situation among various people. Madam Temporary Speaker, it is important that routine statistics are done to ensure that sickle cell anemia is included in routine health statistics. Actual effort should be done to ensure that a level of more statistics is collected so that people can be given the specific support that is critical. Sometimes, the level of counseling that aims at not having stigmatization is important. Certain countries specifically Nigeria and Ghana have gone in that direction. They have a team of people who talk, discuss, counsel and make it easier for people to understand what the real issues are and how they can be taken care of. There is a lack of recognition and comprehensive care as a result of not having the statistics and not delving down to ensure that some level of understanding and categorization is done. This is especially where it is done for a long time, it helps a person to face his or her circumstances, live for a longer time and address his or her various key issues. Madam Temporary Speaker, because it is a lifelong disease, levels of care are important. Some sort of training also needs to be done in terms of explaining what needs to happen, for example, for a child who is undergoing pain in the joints, a smooth massage is helpful and also getting the right medication to ensure that the cell gets back to the normal shape as quickly as possible as it might be required. It is also important to have a social-psychological support to deal with the conflicts and blame that comes as a result. Sometimes, at a much late age, you find people discussing and wondering what happened or went wrong. That needs to be quickly addressed so that it is possible for these people to move forward. It is also important to have a scheme of information sharing that can be put together quickly so that people can talk about it. By doing that, it will help to remove the issue of stigmatization to a large extent. Earlier on today, as I was leaving the National Prayer Breakfast, I met one of the professors from the University of Nairobi. We had a chat and she mentioned The electronic version of the Senate Hansard Report is for information purposesonly. A certified version of this Report can be obtained from the Hansard Editor, Senate."
}