What is Sickle Cell Disease (SCD)?
Sickle Cell Disease is the genetic disease the most transmitted all over the world from parents who can be healthy carriers, not knowing they can give birth to a child with the disease. It is a group of inherited red blood cell disorders creating tremendous pain.
How do we contract Sickle Cell Disease?
The normal hemoglobin is called “A” and the abnormal one “S”. Two people “AS” have a 1 in 4 risk with each pregnancy to give birth to a sick child “SS”.
Each one of us is the result of our parent’s genetic inheritance one being the one which codes the hemoglobin. There are three different situations:
AA – Child inherits 2 normal genes (Father + Mother) no risk of SCD.
AS – Child inherits of 1 normal gene and 1 abnormal: parent can transmit the disease without knowing it. This is why is it essential to receive a screening test called “hemoglobin electrophresis”. If both parents are AS, the risk of having a sick child is of 1 in 4 for each birth.
SS – Child inherits of 2 abnormal genes. The most severe case of SCD.
Being the result of the mutation of genes to fight Malaria, SCD first appeared in Africa, the Caribbean, the Mediterranean area, South America and is now spread all over the Planet.
It appears between -1100 and -200 BC in Africa and Asia then has been spread with slave trade and emigration. It has been discovered in 1904 and recognized by the African Union, the UNESCO and the United Nations by the middle of the 2000’s. On December 22, 2008, it has been declared by the ONU’s resolution as a “public health priority”.
SCD is a chronic disease, which severely handicap and which amplifies with age. It requires a lot of medical attention in a daily basis. It is a disease of extreme emergency as some skeptic process or vaso-occlusive crisis can occur extremely serious visceral anomalies (peripheral arterial disease as stroke, tissue infarction with their own evolving engineering as osteonecrosis, leg ulcers, kidneys damage, hepatic disorders or cardiorespiratory arrest…).
Therefore Sickle Cell Disease is a serious ARGD (Autosomal Recessive Genetic Disease) due to the mutation of a gene of hemoglobin. It causes anemia and tiredness, a tendency of serious infections, potential injuries in many organs and horrendous crisis where the patient suffers constantly. Their recurrence can destroy lives with no choice but using major analgesic as morphine, urgent hospitalizations with for some a long-term stay creating for the patients and their family anxiety and fear of a relapse.
There is no cure (except bone marrow transplants, in very few cases), the prevention remains the most efficient solution to ease the patients.
Sickle Cell Disease is particularly frequent in Africa, in the Caribbean, in North and South of America. It is also present in the Southern Mediterranean Countries (Algeria, Morocco, Tunisia), in Greece, South of Italy, Madagascar, the Comoros, Middle-East, in the Arabian Peninsula and in the Indian sub-continent too. Because of the migration of these populations to Western Europe, Sickle Cell Disease is now also present in Europe.
Recognized as a 4th priority in Public Health by the United Nations with more than 50 millions of sick people all over the world, 300,000 new cases each year, 26,000 sick people and 150,000 healthy carriers in France, it still remains unknown by some caregivers and from the general public.
APIPD is an Association of General Interest, governed by the 1901 law, approved by the ARS (Agence Régionale de Santé/Regional Agency of Health) to represent the users of hospital or public health facilities.
It has been created on November 28th, in 1988 and has over 360 active members in metropolitan France, more than 100 in the French overseas Departments and more than 2,500 all around the world.
A quality oriented sharp management by its President Jenny HIPPOCRATE-FIXY, ensures a firmly structured Association, with a Board of Directors composed of 15 members, a Scientific Committee composed of 27 members of Health professionals, experts in SCD (e.g.: the Professors Frédéric GALACTEROS and Robert GIROT). The Association has 7,000 subscribers and sympathisers and collaborates amongst others with the HAS (Haute Autorité de Santé/High Autority of Health), the MNH (Mutuelle Nationale des Hospitaliers et des Personnels de santé/Mutual National of Caregivers), Paris City Hall, the Île-de-France Region, the Ministry of the Overseas Departments…
Members of various organizations as the Rare Diseases Alliance, the FMH (Fédération française des Maladies de l’Hémoglobine/French Federation of Hemoglobin Diseases), EURORDIS, the EORA (European Organization for Rare Anemias), the Association benefits from efficient advices and data to be able now more than ever to fight ceaselessly to support the patients, their families and the research.
The Association is also partner and collaborates with the EFS (Établissement Français du Sang/the French Blood Establishment).
The main purpose of the Association is to develop public recognition and awareness on this disease by actions and different activities: massive and frequent information to populations of France, the Caribbean, the overseas Departments, Africa, Asia and all the countries around the Mediterranean and the entire world.
To have sponsors, ambassadors as artistic and sportive celebrities, public figure and famous people.
The APIPD is supported regularly by:
- Public Institutions
- Île-de-France Region (Paris’ suburb)
- The Minister of the Overseas Departments
- The Interministerial Delegation to the equality of French in the Overseas Departments
- The City Hall of Paris
- The Territorial Collectivity of Martinique (CTM/TCM)
- The City Hall of Fort-de-France
- Private Institutions
- The laboratories ADDMEDICA
- The laboratories Novartis
- The UGPBAN (Fruit Producers’ Organization in Martinique and Guadeloupe)
- AGS (Insurance Company for craftspeople and farming)
- Various media
- More than 200 community and cultural associations
The President: Jenny HIPPOCRATE-FIXY
The 12th child in a large family of 14 children, she loves sport (running, basket-ball) and she is a top student. Since a young age Jenny has been fascinated in writing and she has got a pure and amazing soul. The fight of Mrs Jenny HIPPOCRATE-FIXY against Sickle Cell Disease is known worldwide. She is fighting ceaselessly for LIFE.
She a multi-talented woman, poet, writer, business woman, trainer and artist. She is a former social Worker and became a psychologist and has given so much happiness since she has joined the APIPD Association. With a considerable energy she has been fighting already for 27 years to raise awareness on the most prevalent genetic disease in the world, Sickle Cell Disease.
Her fight started when her third child, her son Taylor, was born. Since then she would never stop her actions to raise awareness on this disease, mostly to the politicians.
Pioneer in this fight, she is President of the APIPD (1st Association of Fight against SCD), President of the FALD (Fédération des Associations de Lutte contre la Drépanocytose/Federation of Associations to fight against SCD), French representative of the EORA (European Organization for Rare Anemias), delegate in the Caribbean and in its surrounding countries. She submitted a thesis for her DU graduation (Diplôme Universitaire/University Diploma) on the Genetic Disease, called L’Accompagnement de l’enfant drépanocytaire en provenance d’Afrique : l’aspect socio-culturel et la symbolique du sang/The Care of Children with SCD Coming from Africa: The Socio-Cultural Aspect and Blood Symbolism.
Jenny is known worldwide for her actions to fight against SCD and she has been honored and has received many decorations many times.
She has this incredible desire to win over the disease and she is surrounded by the major specialists to roam the entire planet and help various organizations and the patients. Jenny HIPPOCRATE-FIXY is the key figure of the fight against SCD.
Mrs. Jenny HIPPOCRATE-FIXY has received the title of: Femme formidable 2010 (Amazing Woman 2010) of France by the Newspaper Femme actuelle (Modern Woman). She is listed in the book titled “The Book of the 25th Women of Exception” (written by the journalist, Célyne Bayt Darcourt). She also has been nominated in London, as the “Black Businesswoman” of Europe in 2005. Ambassador of the Montmartre Republic, Ambassador of the Creole culinary art. She also received the title of the “Femme Mondiale de la Diaspora Africaine et Antillaise”/“Universal Woman of African and Caribbean diaspora”.
She received up to a hundred of distinctions and awards such as:
- Knight of the National Order of the Merit
- Commander of the Legion of Honor
- Gold Medalist of the French Humanitarian Grand Prix
- Commander by the Principality of Monaco
- Promoted to the rank of Officer of the National Order of the Merit
- Honorary Citizen of the City of Sainte-Mare in Martinique
- Awarded by the President of the Martinique Collectivity (Honored and Respect)
She is Vice-President of the CREFOM (Conseil Représentatif des Français d’Outre-Mer/French overseas departments’ Representative Committee) in charge of Health and Associations. She is also the CESER’s counsel of the Île-de-France Region (Paris and suburb): in the Healthcare Disability Outreach and Sport and Leisure Commissions.
Jenny HIPPOCRATE-FIXY is also the author of several books.