Screening for sickle cell and beta thalassaemia

English translation:

Well, it was when I was pregnant with my first son, I was 25, and at the time when I did my blood tests, it was then that they did a test for sickle cell, but I didn't know what it was for, because they used the English words 'sickle cell', so I still didn't know. It was the first time, I still didn't know what it was. And afterwards when I got the result it said I was 'sickle cell trait', and that day I felt as if I was ill, I was asking myself 'But what is this? What illness is this? What is it?' Anyway I was very traumatised. I even had an exam that day, but I was anxious. I went in to college, when I came back, when they sent me the results they asked me to contact a clinic. So I went there, and afterwards they called and made an appointment, we went, and it's there that they started to explain to us. And the woman who saw us knew what the translation in French was. She told me it was sickle cell and that it's not - that it's an illness where - sickle cell - it's when you are really anaemic. But as far as sickle cell trait is concerned, I wasn't to see it as having an illness. 

Absolutely.

Yes. So that helped raise my spirits again, because I was really down about it.

But if I can interrupt and ask the question, the first time, with the first baby, they told you there was something not quite normal, but did they explain more to you when you got the results from the blood tests you'd had at the start?

No, no, no. They just said, 'The blood test which you did shows you are sickle cell trait.' Yes. So I didn't have any other information, which was why I was so stunned by the news, because I didn't understand it at all, I didn't know what it was.

So it's clear that before you were 25 you knew absolutely nothing about it?

I knew nothing. It was at the moment when she talked about sickle cell that I remembered, because I learnt about it at school. Then I remembered about SS [sickle cell anaemia], all the things I'd learnt at school, and then I understood. 

Yes, but can I ask, you learnt that at school here in the UK, or in Congo?

In Congo, in the third grade.

They showed us drawings to help us understand. It was like photos and everything, they explained, they showed us what happens with a person who's AA [is not a carrier] and what happens when you have children and everything. So, that really helped us too. So afterwards when my husband had done the blood test, they sent us the result saying he was AA and that there was no problem.

Footnote: people often need help in understanding the difference between being a carrier, which is not an illness and does not affect your health, and having the condition. The word 'trait' is sometimes used to describe carrier status. 

French original:

En fait, c’est quand j’étais enceinte de mon premier fils, j’avais 25 ans et au moment ou je faisais mes blood tests, c’est là où ils m’ont fait un test pour détecter la drépanocytose mais je ne savais pas qu’il s’agissait de la drépanocytose parce que c’était ‘sickle cell’, donc je ne savais pas encore. C’était la première fois, je ne savais pas encore ce que c’était. Et après quand j’ai reçu le résultat on me dit que je suis sickle cell trait, le jour là j’étais comme malade, je me demandais, ‘Mais c’est quoi ? Mais c’est quelle maladie? Mais c’est quoi?’ En tout cas j’étais très traumatisée. J’avais même un examen ce jour là mais je n’étais pas à l’aise. Je suis allée à l’école, quand je suis revenue, quand ils m’ont envoyé les résultats ils m’ont demandé de contacter une clinique. Donc j’y suis allée et après on a appelé, on a pris rendez-vous, on est parti, c’est là ou ils ont commencé à nous expliquer, et la dame qui nous a reçu savait la traduction de sickle cell en français. Elle m’a dit qu’il s’agissait de la drépanocytose, et elle m’a dit que c’était pas – c’est une maladie en fait quand tu es – sickle cell - quand tu es anémique vraiment. Mais quant au sickle cell trait il, ne faut pas penser comme une maladie.

Absolument.

Oui. Donc c’est la, ou c’est elle qui m’a avait remonté un peu le moral, parce que j’étais vraiment très abattue.

Oui. Mais si je peux t’interrompre, je peux te poser la question, la première fois c’était avec le premier enfant, mais on t’a simplement dit qu’il y avait quelque chose qui n’était pas normal. Mais est-ce qu’on t’avais expliquer davantage lorsque tu as eu le résultat du sang, ou de la prise de sang qu’on a fait au début?

Non non non. Ils m’ont juste dit que, ‘La prise de sang qu’on t’a fait à montré que tu es sickle cell trait.’ Oui. Donc je, il n’y n’avait pas d’autres informations, ce qui m’a fait beaucoup plus bouleversée, parce que je n’avais rien compris, je ne savais pas ce que c’était.

Donc c’était clair qu’avant que tu avais 25 ans tu ne savais absolument rien.

Je ne savais rien. C’est au moment ou elle m’a parlé de la drépanocytose, que je me suis rappelée parce que j’avais appris ça au college. Là, je me suis rappelée les SS, tout ce que j’avais appris au college, voilà. Et là j’avais compris.

Oui, mais si je peux te poser encore une question. Tu as appris ça au college, ici en Angleterre ou au Congo?

Au Congo.

Ah bon?

Oui, en 3ème.