American Society of Haematology - State of Sickle Cell Disease Report 2016
WORLD SICKLE CELL AWARENESS DAY
"Since 2008, World Sickle Cell Awareness Day has been held annually, in order to help increase public knowledge and raise awareness of Sickle Cell Disease (SCD) and the struggles sufferers and their families go through.
The date was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations, recognising SCD as a public health concern.
SCD affects millions of people around the world, including both adults and children. It is a potentially fatal disease and, according to the World Health Organization (WHO), is one of the main causes of premature death amongst children under the age of five in various African countries.
Some health groups dedicated to SCD treatment or support hold special educational celebrations. However, even if you cannot attend one, why not spend the day researching the illness, learning about the signs and symptoms and increasing your understanding of its global impact?" Taken from https://www.daysoftheyear.com/days/world-sickle-cell-awareness-day/
The date was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations, recognising SCD as a public health concern.
SCD affects millions of people around the world, including both adults and children. It is a potentially fatal disease and, according to the World Health Organization (WHO), is one of the main causes of premature death amongst children under the age of five in various African countries.
Some health groups dedicated to SCD treatment or support hold special educational celebrations. However, even if you cannot attend one, why not spend the day researching the illness, learning about the signs and symptoms and increasing your understanding of its global impact?" Taken from https://www.daysoftheyear.com/days/world-sickle-cell-awareness-day/
What has the Sickle Cell Association done ?
The St.Lucia Sickle Cell Association was the only institution to provide the influenza vaccine to all newborn children with the disease until they begged the Ministry of Health to place this vaccine on their protocol. The Association continues to provide the Pneumococcal Vaccines to all children with the sickle cell disease. Please donate even $1.00 to the Association so that the Association can carry out their work. Look forward to more information on what the Association has done.
- The Sickle Cell Association trained five Lab technicians.
- Provided the lab at Victoria Hospital with new born equipment and reagents the only Caribbean Island except for Jamaica to provide New Born Screening.
- Provided Computers for data collection.
- Provided and developed a data programme for statistical data for patients.
- In the early nineties painted the Children's Ward at Victoria hospital.
- Provided new curtains.
- Installed a hot water system - the nurses had to be boiling water every morning to bathe the children.
- Introduced our outreach programme and school's educational programme - The Ministry has since developed their child development programme island wide based on our out reach programme.
Sickle Cell Red Carpet Awareness and Awards Gala
SSCA COMMUNITY OUTREACH PROGRAMME2nd February 2010
A BEST PRACTICE IN THE REGION Many St. Lucians are not aware that the SSCA offer a COMMUNITY OUTREACH PROGRAMME developed some 15 years ago, that has proven itself to be a ‘best-practice’ in chronic disease care for children in ST. LUCIA and in the Caribbean. The SSCA’s patient support services started in 1989, two years after its launch, aimed at fulfilling the SSCA’S educational, screening and monitoring objectives. Expanded in 1995 with the addition of a full-time dedicated nurse provided by the Ministry of Health, the Castries walk-in clinic offered: adult and paediatric sickle-related patient care provided free of cost, and monthly visits by clinic staff [volunteer Paediatrician and nurse] and also began in Vieux Fort and Soufriere. The year 2000 saw the realization of the COMMUNITY OUTREACH PROGRAMME in all 8 health regions. This has now been expanded and institutionalized into the framework of the Community Child Health Service and patients with Sickle Cell Disease account for a significant proportion of the clinic population, especially in Vieux Fort and other communities in the south of the island. The benefits have grown to include: · tracking and early confirmation of cord blood sickle results; · personalized services from the Community paediatricians; · “Door-Step”, readily accessible care, close to home but with a link to hospital services; · Patient and family counselling, subsidized medications [Penicillin, Folic Acid, Pain Killers] and vaccines [Pneumococcal, Haemophilus Influenza & Hepatitis B] · Access to current information and overseas services; · Year round educational outreach accentuated during the annual September awareness month, school and community lectures and even financial assistance [for school books, uniforms, overseas travel, lab and x ray investigations]. In 1990 Universal Cord Blood screening for Sickle Cell Disease, allowing diagnosis at or very soon after birth, placed St. Lucia ahead of most other English-speaking Caribbean countries and supported by a small annual subvention from the Ministry of Health, from private donations and fund-raising, the Association has become a beacon of light and hope for its patients and an example to colleagues in other islands. The St. Lucia body heads COSCA [Caribbean Organisation of Sickle Cell Associations] and has the distinctions of securing the 1st bone marrow transplant for Sickle Cell Disease in the English-speaking Caribbean through the St. Jude Children’s Hospital, Memphis, Tennessee who successfully offered the benefit of a life free of the disease to one of our patients in 2005. The positive impact of these efforts have included earlier diagnosis and mitigation of the severity of complications, and a reduction in hospital admissions and deaths among young patients. The St. Lucia Sickle Cell Association’s COMMUNITY OUTREACH PROGRAMME truly fulfils the World Health Organization’s 1978 Alma Ata vision of primary care policy improvements by finding our patients, getting to know them, educating them, empowering them to manage the disease, supporting them when needed, and advocating for policy improvements. SICKLE CELL DISEASE WORLD DAY [JUNE 19TH, 2009]The Sickle Cell Disease Association of America (SCDAA) was proud to announce the observance of the First Annual Sickle Cell Disease World Day. This day of observance is the product of the December 18th 2008. United Nations Resolution that called for the recognition of sickle cell anaemia as a public health problem and “one of the world’s foremost genetic diseases”. The resolution calls for member States and the organizations of the United Nations system to raise awareness of sickle-cell anaemia on June 19th of each year at the national and international level. SCDAA would like to acknowledge the efforts of the Sickle Cell Disease International Organization (SCDIO) in bringing about the passage of this United Nations Resolution and in establishing this annual international day of awareness. The public celebration of this resolution will be held June 19th at the United Nations Headquarters in New York in partnership with the World Health Organization (WHO), the United Nations Children’s Emergency Fund (UNICEF), and the United Nations. The resolution has seven major components: 1. Recognizes that sickle cell anaemia is a major health problem 2. Underlines the need to raise public awareness about sickle cell anaemia and to eliminate harmful prejudices associated with the disease 3. Urges Member states and organizations of the United Nations to raise awareness of sickle cell anaemia on the 19th of June each year at the national and international levels 4. Encourages member states as well at the United Nations member agencies, funds and programs, international institutions and development partners to support health systems and primary health care delivery, including efforts to improve the management of sickle cell anaemia. 5. Invites member states, international organizations and civil society to support the efforts being made to combat sickle cell anaemia, including as part of health-system strengthening efforts in the various development programs, and to encourage basic and applied research on the disease. 6. Urges the Member states in which sickle cell anaemia is a public health problem to establish a national programs and specialized centres for treatment of sickle cell anaemia and facilitate access to treatment 7. Requests the Secretary-General to bring the present resolution to the attention of all member states and organizations of the United Nations system. |
Toasts to those who left Us.Remembering Lawson Calderon - 2003
John Wright an Utterly Happy Man - 2005 Francis Tobias a friend to remember - 2010 Success Stories
Newborn Nursery staff - help track Cord Blood test results for early diagnosis
Lab staff (Victoria, Tapion, St. Jude Hospital) - liaison with them iscritical.
Nurse Wilson & Volunteer Pediatrician Dr Michael Camps - offer patients ready care and support at our walk-in Castries clinic
SSCA YOUTH CAMP 2002 [Sponsored by the poverty reduction fund]The St. Lucia Sickle Cell Association held its first successful Youth Camp sponsored by the Poverty Reduction Fund, this Easter in Balenbouche.
The Camp which consisted of children and parents, together with Instructors was organized by the Association in an effort to: · Offer the children an enjoyable holiday combined with a learning experience in a relaxed atmosphere · To educate the children about the sickle cell condition, lifelong values, thus enabling them to cope with their life on a day to day basis · To teach the children various skills such as arts and crafts, computer technology, and music thus enabling them to become valued members of the society · To teach them skills in some sporting activities, educate them about the history of Balenbouche, in a conducive environment, whilst having fun. All of the participants were seen by a Medical doctor before participating in the camp. Our doctor was also on call at the camp. In addition to the disciplined rules of the camp, the structured sessions in music, sports, computer technology, nutrition, first aid, etiquette, there was also storytelling, singing, memory games and talent exposure. The children were able to visit the beach, the river in Choiseul, the Sulphur Springs and the quaint town of Soufriere. All of this being the first experience for the children, many of whom have never left their homes or villages. This opened up a whole new world for these children, and hopefully we will be in a position to assist them throughout their life, says Nurse Wilson, coordinator of the Camp. The children really enjoyed the camp and look forward to others. The St. Lucia Sickle Cell Association wishes to express the gratitude to the Poverty Reduction Fund for supporting this venture. |