The female partner in this couple first discovered she was HIV positive when she came to the UK from Nigeria two years earlier. She has been responding well to medication since, and remains well. She met her current partner shortly after learning her diagnosis. For him, the fact that she is HIV positive has never been an obstacle to their relationship. They decided to move in together and at that point she decided to change her HIV consultant to one nearer to her new home. The new consultant ran a series of routine tests and one of these showed that she was a sickle cell carrier.
She already knew something about the condition from Nigeria, where in her view people talk about it more openly than about HIV. She had not previously realised you could be a carrier and remain well. She now knows it is important for her to avoid having a partner who is also a carrier. Her partner has not yet had screening himself, but because he is white they feel it is very unlikely he will be a carrier. They would like to have children together, but he has had a vasectomy, and they have to practise safe sex because of her HIV. Until they have thought through these issues, the question of sickle cell carrier screening is a lower priority.
For her, discovering she was a sickle cell carrier did not seem very significant compared to having HIV.

And tell me about the, the moment when you then found out about being a carrier for sickle cell and how that happened?

That, like I told you, that happened this year. Because I changed my consultant because I was having accommodation problem. He [partner] lives in [town] and m in north London.

So he said I should move in with him. So I need to change because of the travelling, and because we are advised that yoll need to have a consultant, a clinic that is close to you in case anything happens. Because it’s quite some distance and because m so comfortable with the consultant – hs the man that m losing – I didt want to change. But I had this consultant came to the group I use, and m not very good with women in the medical – but the way she spoke I said,Okay, I might give it a try A lot of people use the place. So I went to see her and I decided to change.

So then they started tests all over again to see what and what, and then they need to get my case study from the hospital, they need to do their own set. So after everything, the only thing that came out negative was that I was a carrier. And that was a shock to me. it’s not a big issue to me, because I know about it back home. The only thing was that it was a shock to me because they didt tell me that before. So, and she said,You have to be careful with your partner that hs not a carrier Then the question I asked her that,How can I be a carrier? ve never been sick. m not in and out of the hospital. And none of my siblings are, and my mother She said it’s possible because it’s one of my parents thas a carrier, thas why none of the children – that the only problem is if both, both partners are carriers. So now what I have to avoid is getting involved with somebody that is also a carrier. And ever since that has not played any issue. it’s no big deal to me because I know about it. I knew a lot about it than the HIV. So I know the only way to prevent it is not to get involved with somebody that is also a carrier as I am.

What would you do if you found out that your partner was actually a carrier?

I wouldt think of having a child with him, because I wouldt want to go through it. Like I keep telling him, the HIV is enough for me. I wouldt want anything, any stress or – thas when the love is not enough, thatOh, because you love somebody then you have to go with it No.

So would you, yod choose the route of not having a child at all rather than getting pregnant and then having the baby tested to see?

I wouldt say I would like not having a child. Then that means my having a child with him would be over. Then I have to look for somebody else.

Yeah, because ve seen people with sickle cell. it’s not something – even because there is no medical, there is no medicine or any way to eradicate it. People can live, like I think in Nigeria we have a club that if yove passed 30 and yore still alive then they believe yore not going to die of it. But if yore below like 20 they are still – it’s like they look up to the children and will say that,Oh, when there in their adult age and if at the point there 20 and there having crises and they dot die that means they have outgrown it or something like that So it’s something they celebrate back home in Nigeria, it’s something they celebrate.

But it’s not something if you know somebody close to you like you want to go through. it’s not something you want to go through. Because if you have a child that has sickle cell, you cat hide it, you cat hide it. it’s worse than, – I can hide my HIV. ll tell who I want to tell. You cat hide it, if m sickle cell, I cat hide it from anybody. Because you cat hold a job, you cat be in school, there is a limit to what you can do, because you are all the time sick. And when you have crises it’s the worst. You dot have crises with HIV, you dot. With sickle cell the crises, thas why I said I dot know which is worse, people having asthma having crises, than people with it.

WomaWve not really –

MaNo.

Woma-because he hast done the sickle cell. But because one, m not bothered about him because I know he will not be a carrier, because it’s not very common in white people. it’s a black people thing. So m not bothered. I dot think wll be of the same blood group or anything. I dot think so. That, m very positive, it’s not possible. Because he doest —

MaWve only just touched on it, havet we?

WomeYeah.

MaVery, very recently.

WomaYeah. You dot have any black origin in your family? No. Even if you have, it will be distant, distant, distant.

MaOnly, only maybe on my mothes side when my grandfather went away, ran away, a long time ago.

WomaSo.

Footnot white people can also be carriers of sickle cell or beta thalassaemia. If a woman is a carrier, the babs father should be offered screening irrespective of family origin.