The role of dietitians in sickle cell care

For this week’s nutrition focus in Sickle Cell Awareness Month, we spoke to Beatriz Duarte who is the new sickle cell dietitian working across South East London. Beatriz is delighted to be working as part of a wider support team for the South East London Enhanced Sickle Cell Community Service. We asked her some of the questions that patients often have about nutrition and sickle cell disorder.

What is a dietitian?

A dietitian is a healthcare professional who specialises in food, nutrition, and diet. Dietitians use their knowledge of nutrition science to help improve health and manage conditions like sickle cell disorder. They give practical and personalised advice on maintaining a healthy diet and making food choices that support overall wellbeing.

I decided to study dietetics and nutrition because I believe I can make a difference in people’s lives through nutrition. It’s important to understand each patient’s unique needs and provide the best care possible. Unfortunately, many people with sickle cell disorder have had to manage their complex nutritional needs on their own, without professional guidance. I am delighted to bring my knowledge to help improve this community’s quality of life and emphasise how important nutrition is in managing sickle cell disorder alongside medical treatments.

What is your role as a dietitian within sickle cell care?

As a dietitian working with people who have sickle cell disorder, my role is to help patients manage their condition and improve their overall health through diet and nutrition. Sickle cell disorder affects everyone differently, so the dietary advice I give to clinicians, patients and carers will be personalised to each individual’s needs, whether they are children or adults.

In our community service, I’ll be working closely with other healthcare professionals like psychologists, nurses, pharmacists, and physiotherapists, as well as welfare support in a multidisciplinary team (MDT). Together, we aim to offer personalised and holistic care for people living with sickle cell disorder, where nutrition plays a key role in improving quality of life and overall wellbeing.

As part of the MDT, my job will include giving nutritional guidance to help patients recover from episodes of illness and maintain good health. This involves assessing each patient’s nutritional needs, considering factors like their medical condition, body measurements, and other health indicators.

What do you see as the main challenges around diet and nutrition for people living with sickle cell disorder?

Sickle cell disorder is such a varied group of disorders, and each type can bring unique challenges when it comes to diet and nutrition at our genetic level. In the case of sickle cell disorder, the genotype, a persons genetic makeup, can be determined by the following:

• Whether a person inherited two sickle cell genes, one from each parent) – this is called haemoglobin SS
• Or, if a person inherits only one sickle cell gene from one parent, alongside another mutated haemoglobin gene, like haemoglobin C. This results in Haemoglobin SC disorder.

The sickle mutation causes the red blood cells to become sickle shaped. These can cause problems because they do not live as long as healthy blood cells and can block blood vessels.

People with the haemoglobin SS genotype often face issues like undernutrition and nutrient deficiencies, whilst those with the haemoglobin SC genotype might struggle with being overweight. Because of these differences, it’s important to tailor dietary advice to each person’s specific needs.

Children with sickle cell disorder may require special attention to their diets because they have higher energy and protein needs than adults and children without sickle cell disorder due to their condition. Nutritional guidance is important to help them grow healthily.

However, many people with sickle cell disorder experience symptoms like pain, fatigue, or breathing difficulties, which can make it hard to eat well. Some medications can also cause issues like constipation, nausea, or vomiting. As a dietitian, I can help address these challenges by suggesting strategies to manage these symptoms and ensure patients get the nutrition they need.

Should anyone with sickle cell disorder consider supplements?

I often receive questions about whether supplements are necessary for people with sickle cell disorder. Patients with sickle cell disorder are generally placed on folic acid and vitamin D supplements. However, folic acid, also known as vitamin B9, can also be obtained from diet. If you have any questions or are worried about whether supplements are appropriate for you, including iron, I recommend patients to speak with their haematology consultant.

Find out more about folic acid and vitamin D in the folic acid fact sheet, and the vitamin D fact sheet.

When should someone with sickle cell ask for a referral to a dietitian?

I would encourage patients who have concerns about their nutrition or diet to speak with their clinical nurse specialist or haematology consultant first. They could possibly be referred to a dietitian like me, who can offer specialised nutritional guidance.

What one diet change would you recommend to someone with sickle cell disorder who wants to improve their overall health?

If I were to ask my patients to change one thing about their diet, it would be to focus on staying hydrated. Drinking plenty of fluids and preventing dehydration reduces the chances of a sickle pain crises. Keeping hydrated can also decrease the likelihood of other health issues that can be common for people living with sickle cell disorder.

Learn more about the importance of hydration in the fluid fact sheet.

What other changes are happening to sickle cell care in South East London and beyond?

In South East London, we are currently launching a new and enhanced Sickle Cell Community Service that will provide greater community support for people of all ages living with sickle cell disorder. This is also happening all across London in different ways. The service in South East London will provide enhanced care for patients’ social, physical and mental needs. It will offer more specialist nurses, better access to a wider support team (multi-disciplinary team), including dietitians, psychologists, physiotherapists, pharmacists, welfare support, and peer support, alongside more education and informative resources.

To hear more about what is happening in South East London visit  the South East London Integrated Care System sickle cell webpage.

 There are improvements being made all across London to sickle cell services. Find out more about what is happening in your area by contacting your local Integrated Care Board.

 

 

Beatriz Duarte

My name is Beatriz Duarte, and I have just started as the specialist sickle cell disorder dietitian in the South East London Sickle Cell Community Care Team. Before this, I worked as a specialist stroke dietitian at Oxford University Hospitals for two years.