Nadine Abondo
Who is Nadine Abondo?
I worked for 8 years to the FMO by making listening to the accompaniment of patients and their families. I have had a curriculum rich and varied. An expert in social policy and socio-medical intervention. A degree of state social engineering, a Master in Education Sciences and a degree in genetics etc.. All these courses have helped to clarify issues in general medical-social.
How have you found to be involved in this fight?
Memories of children being abandoned or left to die in a corner because they are hermaphrodites therefore "monsters" of albino children stigmatized when they are just sick, abuse against children with disabilities, I can not all this injustice. It is a social injustice that is added to the injustice of the birth of being born with a genetic disease.
You started by Cameroon? The state of play, a review of your work in Cameroon?
Yes indeed, being from Cameroon, I started there. A Platform rare diseases, orphan diseases has already been established. It already hosts and supports patients and their families in the care system. We already have doctors on site referrals that support the sick. I returned to Cameroon in August for a day of solidarity and I take the equipment for persons with disabilities.
What's your support? Including Cameroon
For now, being at the very beginning, our partner is now INSERM through Orphanet. The director is the chairman of our Medical and Scientific Council.
What is a rare disease and orphan?
Rare or orphan, those words actually mean the same pathologies. According to WHO criteria, a disease is rare when it affects so-called less than one in 2000. This means that the scale of the French population, over 3 million people are affected, 50million in Africa 1 million to Cameroon. There are between 7 and 8000 rare diseases and orphan in the world and 5 are new discoveries every week thanks to advanced research. The number of people affected, to one degree or another, by a rare disease is evaluated by the European, 6 to 8% of the population. In North America, it takes a rate of 8 to 10%). The term "orphan diseases" reflect the very specific difficulties faced by people with these diseases are as follows: isolation, diagnostic, lack of recognition, lack of treatment, the inadequacy of the over, the absence or inadequacy of research
What are the most common in Africa?
Sickle cell disease will be the most frequent. You will also find albinism, but these diseases are of genetic origin for the majority (80%), they affect all social groups and affect both populations in developed countries than in developing countries. Hence the need for global support of all bodies in charge of health issues. In all cases, the absence of epidemiological data on these diseases in Africa does not now reflect the real impact and incidence in the African population.
You set up an Association for the Fight against neglected diseases and disability in Africa. Tell us?
Indeed, I spent 8 years in service to support patients from the Federation of diseases in France. And it is seeing more and more cases in Africa that I decided to create this association to make available to "mine" my skills and experience. Because if these diseases are beginning to be recognized and better supported in the West, in Africa, they are relayed to the rank of "witchcraft, bad luck or bad luck." People who experience this are highly stigmatized and are subject to abandonment, rejection and discrimination. These include albino children killed and stigmatized in certain African cultures. Given this stigma, some families can choose to hide the children. The consequence is that they do not receive medical monitoring, or support for their disability and special education.
Story Continues...
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