Striving for better health

Transcription

1 MACHNIK SICKLE CELL FOUNDATION UGANDA LIMITED Striving for better health In i About us Machnik Sickle Cell Foundation Uganda Limited (MSF) was established in December 2016 by Mr. and Mrs. Machnik who came with a vision of helping people with sickle cell disease crisis to live longer in healthier lives than before throughout the developing country Uganda. Mission To control the sickle cell disease through massive sensitization of people most especially young couples to always test for SCD before engaging in relationships. Vision To Help People with Sickle Cell Disease Live longer and Healthier than before Sickle Cell Clinic opens at Entebbe General Hospital. MSF helps in fight against malaria in SCD patients. 75% of people living with sickle cell desease are disturbed by malaria MSF gives free treatment to SCD patients of all age. 25,000 babies with SS disease are born each year in poor neighborhoods The majority of Ugandan sickle cell patients cannot afford to buy medicine. info@msfug.org Page 1

2 NEWS LETTER June - August 2017 MSF Clinic Opens at Entebbe General Hospital Machnik Sickle Cell Foundation Uganda Limited opened up a clinic at Entebbe General Hospital in April The clinic offers free medication to people living with sickle cell disease irespective of their religion, culture, race or political background. The clinic operates once a week and opens every thursday which is the clinic day Since the iits inception, the clinic has registered a total of 300 sickle cell patients in 12 clinic days. Our data indicate that, 60% of sickle cell patients who visit our clinic come with other infections majorly malaria which prompted us to give out free mosquito nets to our sickle cell patients which has seen a reduction of malaria infections among the patients. MSF Donates Mosquito Nets to SCD Patients Malia is one of the deadly diseases that has managed to impact the life of SCD patients negatively. Despite the government efforts in fighting malaria by distributin free mosquito nets, most families miss out this chance All people are advised to sleep under mosquito nets but when it comes to the SCD patients who have become poor because of the disease ends up not affording to buy a mosquito net. MSF-CLINICIAN Attenting to SCD Patient at the Clinic MSF-DR. Attenting to SCD Patient at the Clinic MSF-CEO Gives out a mosquito net to SCD Patient DID YOU KNOW? Did you know that Sickle Cell Disease is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a sickle. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome and stroke. Cause of SCD SCD is a genetic condition that is present at birth. It is inherited when a child receives two sickle cell genes one from each parent. MSF - Striving for better health! For more information, visit As MSF, its our obligation to see that SCD patients live a malaria free life, we donated 200 mosquito nets to families with sickle cell patients. MSF-CEO Gives out a mosquito net to SCD Patient Facts About Sickle Cell Disease Page 2

3 NEWS LETTER June - August 2017 Sickle Cell Disease (SCD) What Causes Sickle Cell Disease? SCD is inherited in the same way that people get the color of their eyes, skin, and hair. A person with SCD is born with it. People cannot catch SCD from being around a person who has it. Who is Affected by SCD? It is estimated that SCD affects 7,000,000 people in the Uganda The disease occurs among the age group of 0-30 years SCD affects millions of people throughout the world and is particularly common among those whose ancestors come from subsaharan Africa What Health Problems Does Sickle Cell Disease cause? Following are some of the most common complications of SCD: Pain Episode or Crisis: Sickle cells don t move easily through small blood vessels and can get stuck and clog blood flow. This causes pain that can start suddenly, be mild to severe, and last for any length of time. Infection: People with SCD, especially infants and children, are more likely to experience harmful infections such as flu, meningitis, and hepatitis. Hand-Foot Syndrome: Swelling in the hands and feet, often along with a fever, is caused by the sickle cells getting stuck in the blood vessels and blocking the blood from flowing freely through the hands and feet. Eye Disease: SCD can affect the blood vessels in the eye and lead to long term damage. Acute Chest Syndrome (ACS): Blockage of the flow of blood to the lungs can cause acute chest syndrome. ACS is similar to pneumonia; symptoms include chest pain, coughing, difficulty breathing, and fever. It can be life threatening and should be treated in a hospital. Stroke: Sickle cells can clog blood flow to the brain and cause a stroke. A stroke can result in lifelong disabilities and learning problems. Page 3

4 How is Sickle Cell Disease Treated The goals of treating SCD are to relieve pain and to prevent infections, eye damage, and strokes. There is no single best treatment for all people with SCD. Treatmen options are different for each person depending on the symptoms. Treatments can include receiving blood transfusions, maintaining a high fluid intake (drinking 8 to 10 glasses of water each day), receiving IV (intravenous) therapy (fluids given into a vein) and medications to help with pain. For severe SCD, a medicine call hydroxyurea might be recommended. Research suggests that hydroxyurea can reduce the number of painful episodes and the recurrence of ACS. It also can reduce hospital stays and the need for blood transfusions among adults who have SCD. Is There A Cure For Sickle Cell Disease? To date, the only cure for SCD is a bone marrow or stem cell transplant. A bone marrow or stem cell transplant is a procedure that takes healthy stem cells from a donor and puts them into someone whose bone marrow is not working properly. These healthy stem cells cause the bone marrow to make new healthy cells. Bone marrow or stem cell transplants are very risky, and can have serious side effects, including death. For the transplant to work, the bone marrow must be a close match. The only cure for SCD is bone marrow or stem cell transplant. Sickle Cell Disease Control Sickle Cell Disease Awareness One of the objectives of MSF towards controlling SCD in Uganda is creating awareness. Research shows that the majority of Ugandas population which is a composition of urban and rural areas are not aware of SCD. Most communities take sickle cell disease as a sickness that arise from witchcraft. We believe that by reaching to the community, we shall manage to control the birth of Sickle Cell Disease through sensitizing the community on how sickle cell disease is passed from one perdon to another. MSF - urges all the unmarried and people planning to have children in future to screen for sickle cell traits before. MSF-Meets Nkumba Sec Sch Students Awareness is done at the Clinic, Schools, Universities, places of worship among others. Page 4

5 Sickle Cell Disease Screening MSF - Urges all Ugandans to screen for SCD before they produce children as this would reduce the risk of producing children with SCD. Since it is hard to tell whether one has Sickle Cell Trait, the community is therefore advised to screen for sickle cell trait despite the process being expenssive. That costing will be history since MSF is in the pipeline of obtaining a Sickle Cell screening machine that will be used at the Sickle Cell Clinic in Entebbe Hospital. MSF - will charge 10,000 Uganda shillings (USD $3 ) which will be used to meet the costs of reagents. This is the cheapest screening price at which we plan to offer in Uganda compared to the 40,000-50,000 (USD $ $14.2). We also plan to make the SCD screening free once we get a permanent donor for the reagents. Our Achievements Since MSF started its operations at Entebbe General Hospital, the following were achieved; 1. MSF Clinic was established at Entebbe Main Hospital. 2. MSF was able to start providing free drugs to sickle cell patients. 3. Distribution of free mosquito nets to Sickle Cell Patients 4. Diagnosed and treated 137 sickle cell patients in 12 clinic days for a period of 3 months. The number includes newly registered patients and reviews. 5. Follow up of patients 6. Counseling has also been done Lessons Learned The need for sickle cell disease clinical services is high, available services don t match the demand There is need for community outreaches and medical camps in underserved districts like Kalangala as a number of patients came from there and wanted the services Supply of blood for transfusion to with sickle cell anemia is steadily needed There is urgent need for funds to implement all project objectives to be able to achieve the desired outcome Page 5

6 MSF-TEAM MSF is managed by a team of disciplined and professional staff. The organization is ruled and governed by Standard Hierarchical Organization Structure. Mrs. Caroline Machnik C.E.D Mr. Machnik Andreas C.E.O Ms. Babirye Stella Secretary Mr. Edau Joel Information & Technology Dr. Nyerengeta Simon Doctor Mr Emou Fredrick Med. Lab Technician Mr. Jacob Med. Lab Technician Sis. Irene Enrolled Nurse Mr. Torsten German Representative Mr. Udo Karstens German Representative Page 7

7 Challenges and Way forward Challenges MSF is only able to conduct baseline sickle cell screening test and then refer to other health centers, yet most of the patients are poor to manage referral costs. Infections prevalence is still high among sickle cell patients coupled by other conditions such as hematologic crisis and GIT infections. High patient demands vs the inadequate funding to support the clinic with Low patient turn up due to limited community awareness about sickle disease and services available Limited Way forward MSF plans to be a one stop center for sickle cell service provision that is, being able to perform baseline and confirmatory tests both at static and outreaches sites. This will be done through buying an HB electrophoresis machine There is need for mass community outreaches to create awareness about sickle cell disease and services available Talk to patients and carers about what MSF provides to patients. Make vigorous search for donors There is need for mass community outreaches to create awareness about sickle cell disease and services available Advocate for screening for couples intending to marry for prevention of the spread of the disease, and early screening of babies for sickle cell disease to start treatment early Page 6

8 NEWS LETTER June - August 2017 Our Ongoing Activities / Projects MSF Team at Nkumba Secondary School for an Outreach MSF Team attending to patients at the Clinic Home Visitation Home Visitation MSF CEO handing over mosquito net to a sickle cell patients MSF CEO handing over mosquito net to a sickle cell patients Appreciation: MSF appreciates the administration of Entebbe General Hospital for working hand in hand to ensure our children suffering from sickle cell disease are welcared for. Thank you so much For more information, visit info@msfug.org Page 8