Written by Ellie Dawes, on behalf of SDS UK

Naomi lives with sickle cell anaemia. She talks about how her need to be a “Strong Nigerian Woman” held her back from seeking help, and how one of the biggest impacts on her day-to-day life has been how it affects her relationships with friends and family.

Many people who have Sickle Cell Anaemia are diagnosed as children, but Naomi only discovered she had the condition when she was in her 30s. She and she her husband were trying for a baby. “They assumed that I knew. I had a number of miscarriages, and of course they did blood tests. The nurse just said “oh it could be because of your sickle cell” but I had no idea I had sickle cell. I should have been taking extra folic acid, every day through my pregnancies. But I wasn’t, because I had no idea.”

Naomi had Haemoglobin SC, a type of sickle cell disease, which means her blood cells change shape when they are low in oxygen.  This change of shape makes the red blood cells stick in her vessels, causing severe painful episodes, and damaging her organs in the long term. She needs to receive regular blood transfusions and strong pain killers. Naomi had mixed feelings when she was diagnosed “It’s like there was an angel on one side, and a devil on the other. On one hand I thought—I have lived my whole life with this, so how bad can it be? And then I looked back on being ill in my childhood, I started to reconcile all my past experiences and wondered how I was able to survive all that and come through.”

Growing up with undiagnosed sickle cell

Naomi grew up in Nigeria in a large household, “my father had a lot of wives”, with everyone living in a large house. When she was young, she would find herself often feeling ill “I would feel ill suddenly. With sickle cell, you can just go from 0-10 without warning. People didn’t understand it. Sickle cell will mimic malaria, people used to say, “you have malaria a lot” or accuse me of playing a sickie from school.”

When she was older and studying law, Naomi would be studying on a very busy schedule, and suddenly be in intense pain with a sickle crisis, but of course, she didn’t know what it was. “So, I was happy when I was diagnosed—everything suddenly made sense.”

Isolation

But Naomi wasn’t prepared for how her diagnosis would isolate her from her community and support network. Sickle cell disease is more common in people with an African or Caribbean family background, and in Naomi’s Nigerian community, people with the condition would be looked down on.

“There was a stigma attached, they call you a “sickler”—imagine being called that?

It’s as if everything about you is about you being ill.” Naomi didn’t fit the stigmatised image that some people had of sickle cell, and her friends couldn’t understand how quickly she could become ill.

“My friends couldn’t reconcile the diagnosis with my bubbly personality. It’s hard to explain to other people if you feel OK when you plan the party, and you’re looking forward to it – but then you have to pull out last minute. I would get up so excited to go out, and plan my outfit, but then have a crisis and be in so much pain.”

Tragedy in pregnancy

As Naomi became more isolated from her friends and family, she felt the only person she had as a friend to support her was her husband. Naomi was pregnant again, but there was a problem. Scans revealed that the foetus had severe spina bifida, and some of the organs were developing outside of the ribcage. Doctors were recommending a termination. Naomi’s husband said they should follow the advice of the doctors, but after her previous miscarriages, Naomi was finding the decision to end the pregnancy difficult.

The couple decided to travel from their home in Milton Keynes to Oxford to get a second medical opinion. The night before the appointment, Naomi and her husband both dreamed about a baby girl. When they got to the appointment, the doctor asked if they would like to know the sex of the foetus, and confirmed it was a boy.

“I am a very spiritual person, and that helped me to make the right decision. It was a sign that this was not our baby, not the right time. So, I listened to the doctor and went ahead with the termination.”

The miscarriages and arguments about the termination were putting a strain on the couple’s relationship. Afterwards, they took a break from trying for a baby to concentrate on Naomi recovering her health and looking after herself. But one day, she had awful stomach-ache at work and was taken to hospital, where she was shocked to hear she was pregnant again. “I was all by myself, I hadn’t thought for a minute I could be pregnant, we weren’t even trying. But then they told me I was pregnant! The nurse went out to get a consultant, and I was so frightened because it was exactly like the last time, they went out to get the consultant to give me the bad news.” I thought there was something wrong again. But then the consultant showed me the scan on the screen and said, “No everything is alright, and look—I can see one heartbeat here—and one heartbeat here.” It was twins!” Naomi felt astonishingly well during her pregnancy and after a premature induction, “normal for multiple births,” she gave birth to a girl and a boy, Hadassah and Daniel.

Living with unbearable pain

Life with sickle cell disease is characterised by painful episodes called a sickle cell crisis, known as vase occlusive crisis. A sickle cell crisis can begin suddenly and last for days. Pain from a more severe crisis may persist for weeks to months. These episodes inhibit Naomi from carrying out her day to activities and cause her to isolate herself from social interactions. Without proper treatment, a sickle cell crisis can lead to potentially serious complications, including organ damage and vision loss. Pain from a sickle cell crisis tends to be felt in the chest, arms, legs, fingers and toe—making it very difficult to carry out the most basic daily chores.

Naomi’s health care is provided for by consultant haematologists and specialist nurses. During a sickle cell crisis Naomi would be hospitalised, and these hospital admissions could take anytime between a few days to weeks. Naomi sees a team of specialist doctors to help manage her condition.

Young carers

Naomi has her beautiful children, who grew to assume a caring role in their family. Once when they were little Naomi regained consciousness to find an ambulance crew telling her how amazing her children were. “They called the ambulance and when the crew got there, they knew all about my condition, all my medicines, everything.”

It was the twins speaking up in primary school that led to Naomi getting more support. “I was paralysed all on my left side, I couldn’t move.” At lunchtime at school, teachers noticed the twins were not eating anything. The kids said they wanted the teachers to call home and find out if she had managed to eat any lunch. If she’d eaten, they would eat.

“I will never forget that teacher. They came to my house. When they said they were going to get social services involved I was so scared because you hear social services, and you assume they are coming to take your kids. But they said no, it’s social services for you, you can have some help.”

Naomi wells up when she talks about the difference this extra support made to her. It took an open mind and a change in perspective which came through the help of sessions with the psychologist.

Psychological support

Another type of support that transformed Naomi’s outlook was getting support from a psychologist. She now believes this should be offered for anyone who has a similar serious illness. “I was put off – I thought people would call me a psycho!” Naomi hopes to pass on what she’s learned about accepting support and having compassion for yourself to her children. “

My son told me one time “I was so sad about you having to go to hospital, I went into the bathroom and cried because I didn’t want my friends to know” That broke my heart.” “Seeing a psychologist really helped me to have compassion for myself. When I was in pain I would think “I am stupid I’ve done too much, this is my fault.” So many bad thoughts would come in.” But the psychologist equipped her with tools and ways of thinking that were much more helpful.

“Something that really helped me was about ships dropping anchor. She said that when the ship is in trouble in a storm you don’t wait to reach the shore, you drop anchor and wait it out.”

“Now my carers say I am positive even when I am in pain. Sickle Cell has changed me as a person, it’s made me appreciate life more. “

Living life to the full

Naomi now surrounds herself with friends who understand her illness and support her. She has just returned from Egypt where she went scuba diving! “I was so ill on the plane because of the altitude, but in the water breathing the oxygen, I felt fine!”

Naomi now volunteers for the charity Congenital Anaemia Network (CAN). She loves meeting and supporting others who are living with similar rare conditions. “I am grateful to be a part of CAN. To be able to meet outside of clinic and to talk about things affecting us is such a joy.” Holding onto moments of joy and positivity helps Naomi to cope on more difficult days.

“I always look out for the breadcrumbs. Like Hansel and Gretel. They always lead you back home. Home is a place where I am at peace and have accepted myself for who I am.”

This is the fourth in a series of six articles that we will share during 2024 to shine a light on six small and micro charities working collaboratively with funding from The National Lottery Community Fund. The charities have come together as part of the Better Together for Healthy Bone Marrow project to build organisational resilience and support the resilience and emotional well-being of their communities.

The six charities are:

• The Aplastic Anaemia Trust
• Congenital Anaemia Network (CAN)
• DC Action
• Fanconi Hope
• PNH Support
• SDS UK

Collectively, the organisations in the Better Together for Healthy Bone Marrow Alliance recently published the Rare Voices report that highlights the impact of living with a rare condition affecting bone marrow. You can read the report or order a free print copy at super-rare.org/report