Sickle Cell in Brazil

During June 2012 Professor Simon Dyson and Dr Sue Dyson of the Unit for the Social Study of Sickle cell and Thalassaemia at De Montfort University were invited guest speakers at a Brazilian seminar on sickle cell in schools. The title of the seminar Saber Para Cuidar: Doenca Falciforme na Escola means Knowing for Caring:   Sickle Cell Anaemia at School. Here they talk about what they learned whilst in Brazil.

 Sickle Cell in Brazil


During the summer of 2012 we were fortunate to be invited to Brazil as guests of NUPAD, the newborn sickle cell screening programme for the state of the Minas Gerais. One of the first things we had to learn is to think of Brazil not as a country, but as an area the size of a whole continent. It is only one of 24 states that make up Brazil, but Minas Gerais on its own is about the size of France. Sickle cell patients who have to travel to the capital Belo Horizonte for their specialist care may have to travel 800 kilometres! However, transport is provided free for patients who have to do this, as is overnight accommodation. Brazil is also a country that takes it responsibilities to Africa very seriously. The Brazilian government is funding the first three years of Ghana’s newborn screening programme and whilst we were there we met laboratory technicians from the country of Benin who were on a six month placement being trained by Brazilian laboratory scientists in laboratory techniques for newborn sickle cell screening.

The organizers of the seminar had gathered an impressive range of over 200 stakeholders to their conference, including representatives of the ministries of health and education, and members of the state and national sickle cell support groups. What we learned from the seminar may be summarised as follows.

In both the UK and in Brazil children with sickle cell disease at school are becoming ill through lack of care by the school staff. There are good education materials for use in schools in the UK, and there are excellent educational materials developed by CEHMOB (Centre for Education and Support for Haemoglobinopathies) for schools in Minas Gerais.

The Minas Gerais Ministry of Education appeared to have appropriate policies on inclusion of children with medical conditions in schools and on children’s rights in schools. However, these aspirations for inclusion and children’s rights were not currently being realized for children with sickle cell disease in Brazil. Maria Zenó Soares, the head of DREMINAS, the Minas Gerais Sickle Cell Support group had interviewed around 100 young people with sickle cell disease from all over the state of Minas Gerais. Interestingly, their results almost exactly mirrored those found by our research here in the UK: students with sickle cell disease were not allowed to drink water in class, and were not allowed to use the toilet. Even those who were allowed water in class were then not permitted to use the toilet and so the young people stopped drinking their water. Teachers did not understand that young people with sickle cell disease might have to avoid strenuous exercise and many were mistakenly labelled as lazy by teachers who did not understand that their anaemia made them tired and made it difficult for them to concentrate. Some parents from the support groups felt that schools were falling so far short of these ideals that some delegates to the seminar described what is happening to children with sickle cell at school as “violence against the child”!

A Brazilian professor of education then made some interesting points. She described teachers in Minas Gerais as “anguished”. The teachers have numerous targets/league tables imposed upon them. They are not well paid and have to seek other jobs to supplement their income. In addition they have many children with many different types of chronic illnesses and diverse needs in their classes. Many of these points could and have been made about the position of teachers in England. The structural pressures on teachers in the UK and in Minas Gerais are therefore very similar.

This suggests that, in both the UK and in Minas Gerais there is a structural problem that goes beyond the individual qualities or personality of the teacher. This is why the Brazilians were keen to see young people living with sickle cell disease supported by strong policies and not just education materials.

If all schools permitted all children to drink water and go to the toilet when needed there would be no need to draw attention to children with sickle cell disease as different from their peers. If all children had the opportunity to attend extra lessons in the early evening to catch up what they had missed this would help all children.  The more that teachers can do the right thing for a child with sickle cell disease without having to specifically think about what they are doing every second of the day, the more likely it is the child with sickle cell will be supported. This again is why a policy is required as well as the excellent education materials that have been developed.

A guide to school policy has been produced by the Sickle Cell and Education project led by Professor Simon Dyson of De Montfort University, and we spoke about it at the Brazil seminar. The leaflet is aimed not directly at classroom teachers (though they would be very welcome to read it) but at those with a broader responsibility. It is written with the following kinds of people in mind: the lead teacher for young people with a medical condition; heads of year; school nurses; heads of school nursing; local authority school advisors; school governors. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD).

Any person or organization is welcome to circulate the guide, or to copy or place on a web-site as they wish. It is also available to download at . On the leaflet you may notice a particular symbol:

Creative Commons CC BY-SA Licence


This is something called Creative Commons. It basically means that unlike usual copyright (which aims to restrict usage or make people pay to use it) this can be freely copied and used, subject to two conditions:

BY: the original author needs to be acknowledged: the leaflet is BY someone.

SA: Share Alike: if someone adapts and reuses the leaflet they may only do so on the undertaking that they share the resulting new resource back with the global community on the same terms.


Therefore if a particular local authority or a local sickle cell group or even an individual school wishes to use and adapt the leaflet, then they are free to do so provided they share their version back with the global sickle cell community. We are particularly pleased that the Brazilians now intend to adapt the guide to school policy developed here in the UK, translate it into Portuguese, and use it to develop policy in Minas Gerais. In this way we hope to improve the school experiences of young people living with sickle cell disease in both the UK and in Brazil.


Research by S Dyson

The Guide to School Policy that is to be adapted and translated into Portuguese.

Brazil Artwork
Winning artwork from a competition to depict sickle cell

Winning artwork in competition for young people living with sickle cell disease organized by the Centre for Education and Support for Haemoglobinopathies, Minas Gerais


Jesus Christ Statue
The famous Christ Statue in Rio de Janeiro
Maria Zeon Soares
Maria Zenó Soares, the Head of DREMINAS, the Minas Gerais Sickle Cell Support group


Sugar Loaf Mountain
Sugar Loaf Mountain, Rio de Janeiro


Jose Nelio Januario
José Nelio Januario – NUPAD, School of Medicine, Federal University of Minas Gerais speaks during the seminar.






Judy Johnson – Living With Sickle Cell Disease

Judy Johnson Author

We are delighted to have a blog contribution by Judy Johnson relating to her recently published book on living with sickle cell disease. Here is what Judy says:

Living With Sickle Cell Disease: The Struggle to Survive was a book I absolutely had to write. Prompting me to undertake such a daunting project was finally having had it with being treated as less than a person whenever I showed up at an emergency room.  More times than not, I would cry in extreme pain, only to have medical personnel tell me to “cut out the drama.”  I also got tired of being viewed as a drug addict seeking a fix.

While this book serves as a memoir about my life with sickle cell disease, I also intend for Living With Sickle Cell Disease to be my message to doctors and nurses that they would do well to treat sickle cell patients not only with medicines, but also with compassion.

I also wrote Living With Sickle Cell Disease, to tell readers how I was able to attend college, teach school and raise a daughter by myself. As I say on my website,, I hope my memoir advances conversation on sickle cell disease, and in telling others who suffer from sickle cell and other chronic illnesses that they too can rise above the challenges their own bodies throw at them.

So far, the early reviews have been positive. Several people who have read the book have told me it is powerful and will tell their friends. One of the first endorsements came from a 90-year-old man who picked up a galley copy and read it from cover to cover in one sitting. He said, “I couldn’t put it down.”

I sincerely hope that others who read Living with Sickle Cell Disease will not “put it down.” I also pray that they come away with a new appreciation for what it is like to live with this little-understood blood disorder.

Living With Sickle Cell Disease

by Judy Gray Johnson & Leroy Williams, Jr.

Details of how to purchase the book are available on Judy’s website: (accessed 4th June 2012).

(Update November 2017 – I note Judy’s website is no longer available. You can purchase her book by Amazon:


Student created OER – genetic inheritance

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Nick Machon OER
Genetics interactive game produced by final year computer science student Nick Machon

Content Author:
Nick Machon – wrote all content and created Flash animation

All learners

OER Features:
Interactive animations

OER Description:
Some of my best experiences working on OER projects is when students offer to be involved. Nick was computer science final year student looking for a project, and undertook the challenging area of grappling with genetic inheritance to produce a series of interactive Flash animations. He was a pleasure to work with – very organised and hard working, and these resources have been used a lot on open days and out reach events with schools and colleges. Unfortunately now, Flash isn’t supported on the web and it is no longer easy to play these resources. This post is therefore in recognition of his hard work.


Sickle Cell. Disease or Disability?

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Hi, my name is Vanetta, I’m 23 and I have Sickle Cell Anaemia.

Vanetta's Blog Post

Writing that sentence just felt really weird, because whenever I introduce myself, that having Sickle Cell would be the last thing on my mind to tell someone. Not because I’m ashamed or afraid of what others will think of me, but simply because I don’t feel I am defined by it.

That is why the first time heard the word ‘Sickler’ used for someone with SCD (Sickle Cell Disease) a couple of years ago, I felt like someone had deeply insulted me.

I am NOT a ‘Sickler’ – I have SCD just like you have two eyes!

Okay, maybe that’s taking it a little far, seeing that your eyes will hopefully never hurt as much as my pain crises, but you know what I’m trying to say, right?

Or do you?

Because the way I see it is: it’s a chronic illness yes, but it is not constantly acute, so I live with it as ‘normally’ as I can; it may trip me up like many other things in life, but it WILL NOT hold me down!

But then I wonder do I only have this view of SCD, because I have been truly blessed as to how often and severe my crises are? Because the other day a friend was telling me that her relative, a grown male with SCD, is making preparations for his soon anticipated death, following severe bouts of crises which have left his liver totally damaged. He just had what’s expected to be his last family holiday with his wife and children and here I am saying I practically forget I have SCD until my annual major crisis occurs or my body softly start throbbing after a particularly ‘reckless’ day without enough sleep, drink or meds. And then on the other end of the spectrum are stories of cousins and family friends who haven’t had crises in 5, 10, 15 years!

What is it with SCD that makes it possible to see such wide ranges in experiencing it on a day-to-day basis? Is it just based on the medical treatment and information one has access to? Or the social support? Or is it what we personally do after having received the treatment, information and support?

What do you think of it? Is it a disease or a disability? Does it just (severely) ‘dis-ease’ you from time to time or does it ‘dis-able’ you completely? And what do you think is the deciding element in causing the difference?

Vanetta is a student at De Montfort University involved in the SCOOTER project.

Marvellette founder dies

The death of Marvellette reminds us of an earlier sickle cell disease death. Today, 28th January, the BBC News Service announced the death of Gladys Horton, founder and lead singer of the 1960’s all-female Mowtown band, The Marvellettes on 26th January at the age of 66. The Marvelletes are best remembered for their 1961 number one hit “Please Mister Postman”, later covered by both The Carpenters and The Beatles.

“Please Mr. Postman”

The Marvelettes in a 1964 promotional photo: (clockwise from left) Gladys Horton, Katherine Anderson, Georgeanna Tillman and Wanda Young.

Marvellettes photograph – Tomasupten,

(Source: Tomasupten,

What is less well known is that one of the backing singers and founding members of the group was Georgeanna Tillman, who married Billy Winter of male Mowtown band The Contours in 1963. Georgeanna is reported to have had both sickle cell anaemia and lupus. Complications of her illnesses are reported to have been behind her stopping touring in 1965 and subsequently leaving the group for good. She is variously reported to have died from complications of her sickle cell anaemia/lupus on January 6th 1980, aged only 36.