WORLD SICKLE CELL DAY REPORT 2013

Transcription

1 WORLD SICKLE CELL DAY REPORT 2013 SICKLE CELL ANEMIA, THE KENYA SITUATION A report on the commemoration of the 4th World Sickle Cell day, held on 19th June 2013 at Gertrude s Children Hospital, Muthaiga, Nairobi, Kenya Compiled by Children Sickle Cell Foundation 19 September 2013

2 The Children Sickle Cell Foundation Kenya (CSCF) was established in 2001 as an independent not-for-profit community based organization. It is run by members living with and those taking care of persons with Sickle Cell disease. CSCF is dedicated to improving the quality of life of persons living with Sickle Cell disease. This year s World Sickle Cell Day was held on Wednesday 19 th June, The day was set aside by the United Nations in 2009 for the world to reflect on the Sickle Cell disease. The UN member states recognized Sickle Cell disease as a public health problem given the number of children affected all over the world, especially in Africa. CSCF in partnership with Gertrude s Children Hospital hosted a one-day workshop which was held at Gertrude s Children Hospital in Muthaiga, Nairobi. The workshop brought together Doctors, Nurses, Academia, various Institutions involved in Sickle Cell and individuals from across the country to discuss the Kenyan situation. This year s theme was SICKLE CELL ANAEMIA, THE KENYAN SITUATION. The event started with opening remarks from Dr. KC Wafula, a consultant Pediatrician and also the Patron of CSCF. He welcomed the Guests and participants to the event. The Guest of Honor at the event was Prof. J. Aluoch of Maseno. Various presentations and discussions were made in the day-long event, which educated and informed the participants about the theme. It was quite clear that, the Kenyan situation needed a lot of goodwill from the Sicklers, affected families and the Kenyan Government for it to change for the better. Dr. Nyambura Kariuki, Pediatric Consultant and Hematologist gave a presentation on Role of Comprehensive Healthcare Management in Sickle Cell Disease. The presentation was focused on the importance of persons affected by Sickle Cell anemia getting available and accessible comprehensive healthcare management. Her presentation also touched on the World Sickle Cell Day 2013 Report Page 1 of 11 Children Sickle Cell Foundation

3 health challenges that Sickle Cell patients go through on a daily basis and preventative care that can be administered to the patients for quality of life. Dr. N. Githanga gave a presentation on Diagnosis of Sickle Cell Disease and Overview of Sickle Cell Disease in Kenya on behalf of Dr. Grace Kittonyi - Hematologist. She emphasized on the importance of early diagnosis and management of Sickle Cell Anemia in patients. Early detection of the condition is important because most patients suffer a series of challenges like damage of the organs and frequent infections as a result of late detection of the condition. She mentioned that Kenyatta National Hospital is a national institution that has put in place mechanisms for early detection in infants and management of Sickle Cell anemia and appreciated the fact that the facility is not fully equipped to handle the situation in the entire country. Dr. Ngwiri s presentation was on the role of Gertrude s Children s Hospital as a referral pediatric hospital in the management of Sickle Cell Disease. Gertrude s Children Hospital has put in place mechanisms that give first line support and care to patients with Sickle Cell anemia. He said that as a referral Children s Hospital, they receive a number of cases of Sickle Cell Anemia and as an institution they understand the burden it comes with both financially and emotionally, hence Gertrude s is constantly ensuring that the patients get a fast and comprehensive care for quick recovery. Dr. Ngwiri s presentation was later on augmented by Gertrude s Matron, Emily Nguu who gave a presentation on step by step intervention for patients with Sickle Cell anemia at Gertrude s Hospital. She mentioned that the nurses and doctors at Gertrude s are in constant quest to better understand and document best practices for caring for patients of Sickle Cell anemia. Gertrude s hospital has worked on a flow-through of how Sickle Cell patients are handled from entry to discharge both as inpatient and outpatients. This has eased the burden to parents and caregivers of children with Sickle Cell anemia who visit Gertrude s Children Hospital. World Sickle Cell Day 2013 Report Page 2 of 11 Children Sickle Cell Foundation

4 Prof. W. Macharia - Pediatric Blood and Cancer specialist also Professor & Chair, Department of Pediatrics at Aga Khan University sent his statement about the commemoration of the World Sickle Cell Day His statement was read by Dr. K. C. Wafula. The Guest of Honor Prof. J. Aluoch gave a comprehensive presentation of Sickle Cell Anemia in Kenya. The presentation consisted of his past research study of Sickle Cell anemia in Kenya. The regions within Kenya with large population affected by Sickle Cell anemia are Nyanza, Western, Kisii, and Coast (Especially the Kambe tribe). Other parts of the country have as low as 2% affected in a region but this is attributed to migration and settling in areas with low or no prevalence of Sickle Cell anemia. It is important for the Kenyan Government to pull up socks by way of increasing its resources in affected regions and have necessary facilities that can help persons with Sickle Cell anemia improve their social economic activities without feeling that they are marginalized. Sickle Cell anemia is a very old topic in the world and other countries are working very hard to find lasting solutions to provide their affected citizens with quality of life and equal opportunities. Prof. Aluoch pointed out that Sickle Cell anemia in Kenya cannot be ignored anymore and therefore Kenyan doctors are encouraged to pay more or equal attention to the subject just like they do for Malaria and HIV in the country. Ms. Lea a young lady in her 20s gave a speech emphasizing that Sickle Cell Anemia is not a barrier but instead an opportunity. She stressed that Sickle Cell Anemia cannot bar one from achieving their dreams. She shared with the audience that looks at herself as a whole person who has the ability to do what she wants and that Sickle Cell Anemia makes her feel extra special. She implored Sicklers to take care of themselves by always keeping warm, taking their medication regularly as prescribed by the doctor, getting regular checkups, having constant hydration and always bearing a positive attitude. World Sickle Cell Day 2013 Report Page 3 of 11 Children Sickle Cell Foundation

5 Mrs. Foulata Kwena Vice Chairperson, Children Sickle Cell Foundation talked about the foundation and its role to the community. She said she was happy that doctors are a part of solution seeking and that the foundation is happy and willing to offer its support to ensure sickle cell anemia is managed better in the country. Mrs. Selina Ogweno - Chairperson, Children Sickle Cell Foundation, advised parents to let their older children participate in CSCF meeting and parents of younger children to attend and gather useful information that can help give quality of life. To the Doctors, she requested them to participate more, so that parents with children affected by Sickle Cell Anemia don t land in the hands of quacks. She affirmed that CSCF was ready to work with doctors and institutions that would help come up with a lasting solution to Sickle Cell Anemia. World Sickle Cell Day 2013 Report Page 4 of 11 Children Sickle Cell Foundation

6 IN COMMEMORATION OF WORLD SICKLE CELL DAY June 19 th 2013 Haematologist s view of Sickle cell Disease in Kenya I am indeed delighted to be part of this occasion that helps to remind the world about existence of this important cause of ill health and loss of lives of many in Kenya and other parts of the developing world. This is the most prevalent genetically acquired disorder and has its home in sub-saharan Africa where resources for optimal care are most limited. It is never-the-less a shame that we in developing countries have not done enough to take full advantage of some fairly simple interventions like increased fluid intake, immunizations, use of penicillin v and antimalarial, early detection of infections with referral for treatment which have seen life expectancy in west shift from about years over the last few decades. There are many brothers, sisters, mothers and daughters in Kenya who still do not know what the cause of this condition is. Clearly, we should not expect change in behaviour in the absence of knowledge and positive attitudes in our population. Our primary roles as leaders in health must therefore be creation of awareness whenever opportunities arise, whether in structured campaigns or when we are providing clinical services. We should always give enough time to education of newly diagnosed clients since that empowers them to manage their condition and assist others who may not be fortunate enough to meet well informed professionals. As a specialist in treating mainly children with sickle cell anaemia, I have witnessed a large mix of patients. Some well-informed, others not so knowledgeable, some with mild diseases and others with severe crises and complications. They all have desired to know the cause of the disease, its mode of inheritance, what they need to do to lead a better life and whether the disease is curable. Many others have wanted to know about bone marrow transplant or stem cell transplant assuming it is a simple procedure without life threatening complications. It is of course out of reach for many because of the high cost of about Kshs 3.5m in India and about four times higher in South Africa. Majority who undergo the procedure get literally cured of Sickle Cell Anaemia but about 3-4 out of 10 develop severe lifelong rejection complications. We need to always emphasis that only those with compatible donors actually have this as an option and that it is reserved for only those with complicated disease where basic measures would not offer acceptable quality of life. World Sickle Cell Day 2013 Report Page 5 of 11 Children Sickle Cell Foundation

7 Better understanding of the condition coupled with basic preventive precautions goes a long way in improving quality of life in patients with SCA. Discovery of the important role of Hydroxyurea in prevention of severity and frequency of painful crises in adults and children was a real blessing. With its regular use, many have forgotten past days of frequent admissions. We really should advocate strongly to ensure that it becomes universally available in the country; just like those with albinism have been given relief for sunscreens through government budget. Fellow citizens, SCA is a very common disease and the affected are as needy as those with other more hyped diseases. We need to streamline our national services to provide uniformly high standards of care and shout louder for our piece of the National Cake! God bless you all. William M Macharia Paediatric Blood and Cancer specialist Professor & Chair, Department of Paediatrics, Aga Khan University World Sickle Cell Day 2013 Report Page 6 of 11 Children Sickle Cell Foundation