HTTP 200 OK
Allow: GET, PUT, PATCH, DELETE, HEAD, OPTIONS
Content-Type: application/json
Vary: Accept
{
"id": 905170,
"url": "https://info.mzalendo.com/api/v0.1/hansard/entries/905170/?format=api",
"text_counter": 291,
"type": "speech",
"speaker_name": "Sen. (Dr.) Zani",
"speaker_title": "",
"speaker": {
"id": 13119,
"legal_name": "Agnes Zani",
"slug": "agnes-zani"
},
"content": "The research for sickle cell clearly indicates that sometimes it is difficult to detect. In fact, it is usually not detected probably, until three years, and it is a hereditary diseases. Upon detection, sometimes a lot of blame game is done because it is hereditary and people begin to look for where the problem might have been. The other problem is that at the end of the day, it is not yet treatable. Proposals are being made now for stem cell transfers that are being put in place for the future. Madam Temporary Speaker, research is going on to see whether sickle cell anemia can be treated. As at now, we do not have a way forward in terms of its treatment. This then makes it quite complicated. Many people have the benefit of being cured if they have a disease. However, when you cannot get a cure, it causes many problems. The Mover of this Motion clearly indicated the issue of stigma, and more so, the condition of a person living with sickle cell anaemia. As you age, the disease becomes more complicated. For example, when you watch a child who has sickle cell, the amount of pain is unbearable. The level of medication and treatment is never very clear. This is because the more you try to use many painkillers, the more you move to a point where you might affect crucial organs such as the liver. So, it becomes a balance of what to do. Sometimes a lot of pain is felt especially at the joints. In situations where children becoming adolescents, from around the age of 10 or 12 years, there is a lot of pain across the hips, tailbone and any place where there is a joint. It becomes very difficult to manage. Since this disease is not spoken about often enough, it has tended to be ignored. There is an association mainly composed of mothers and parents who have children with sickle cell that acts as a support group. They also try to discuss ways and means of ensuring and trying as much as possible over time, to ensure that they get the best treatment. However, most of the time it is just that; a support group trying to analyse and see ways to treat the condition. We also know that medical care is very expensive. In many cases, you will be called to a fundraising that involves somebody who is suffering from cancer, but rarely does it happen for patients with sickle cell. I suspect that the bigger amount of the cost is mostly borne by the parents because I think they do not want to go through the situation of explaining. Many people do not know much about the disease to be able to take care of it. Madam Temporary Speaker, this disease is everywhere, but it is common in Luo Nyanza, among the Luhya, Mijikenda, and across other communities. However, the problem is that right from the onset, there is a lot of ignorance. There is not enough statistics that has been put in place to find out what the level of predominance might be. A national survey was conducted in November, 1987 to May, 1990. This data is probably quite outdated. I know the Mover has given other data, but at that time, they found about 3,605 cases of people with Sickle Cell Diseases (SCD). Of this, about 73 per cent were below the age of 15 years. This again speaks to the problem of a disease that actually affects the young. There are many young men and women who want to live a normal life. They want to go to school, enjoy and interact with their friends, neighbours and other children. However, when children who have sickle cell get an attack, it becomes very difficult. At other points, they live in a very comfortable world. The nexus of this disease is that the red blood cells are usually in a donut shape. Certain times, because of a low oxygen level, the shape of the cells moves to 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."
}