I was delighted and honoured to have the opportunity to deliver a talk on Healthy Eating with Sickle Cell Disease (SCD) for the Sickle Cell Society on Saturday. The audience was made up of trustees, adults who have SCD and parents of have children with SCD.
I have family members with this condition, and I carry the gene myself so it was important for me to raise awareness on how food and nutrition can help to promote better health.
Sooooo I’m using this as an opportunity to raise awareness of this condition because there really isn’t enough about it and there is a lot of negative stigma attached to the condition.
A Few Facts
It is a genetic condition that affects 12,500-15000 people in England and is most common in people of African, Caribbean and Mediterranean decent (often inappropriately labelled as a ‘black persons’ disease)
If both parents have the SCD gene, that means there is a 1 in 4 chance of each child inheriting both genes. Having 2 genes means that the child will have SCD. Having 1 gene means that the child will be a carrier of the SCD gene, but they will not have any symptoms.
Instead of circular and flexible red blood cells, the bone marrow produces a mixture of round and half-moon (or sickle) shaped red blood cells which are rigid and easy to clump together
The main symptoms of SCD include:
- Anaemia so early fatigue and shortness of breath
- Increased risk of infection
- Episodes of pain called sickle cell crisis. These can last from a few hours to a week and can present itself has a headache or severe joint or chest pain. Sickle crisis is when the sickle shaped red blood cells clump together in a blood vessel. This blocks the delivery of oxygen to muscles and/or organs. Because of this people with SCD are at a much higher risk of having a stroke, heart attack or organ failure.
This a summary of the key messages I highlighted during the talk.
4 reasons why it is important to have a healthy diet with SCD
Energy requirements are higher because the body is in a constant deficit of red blood cells. The spleen works overtime to clear the body of damaged (sickled) red blood cells, and the bone marrow is working overtime to replace to them.
Protein requirements are higher because the body is constant demand for making new red blood cells and protein is required to make them.
Risk of unintentional weight loss is high because a lot of energy is being used in making new red blood cells so less is available to help create muscle mass, promote bone growth or maintain bone density and for energy reserves. It is also common for there to be a reduction in appetite during a SCD crisis or hospital admission
Risk of infection is higher because the blood vessels leading to spleen, which is involved in filtering bacteria out of the blood, are at a higher risk of getting clogged by the sickle shaped red blood cells.
5 ways to help reduce risk of SCD crisis and manage symptoms
Dehydration is one of the most common cases of SCD crisis. Adults should aim for 3-4L of fluid a day (so that includes hot drinks, dilute fruit squash, cordials, milky drinks etc. It does not mean 3-4L of just plain water)
Aim to have a varied diet including 5 portions of fruits and vegetables. Fresh, frozen, dried and tinned all count. Tip- choose fruits in juice instead of syrup to reduce sugar intake and choose tinned vegetables which have no or reduced added sugar and salt. Fruits and vegetables are a source of anti-oxidants such as Vitamin A, E and K. Anti-oxidants prevent toxins made in the body from damaging other cells and organs and may also help prevent SCD crisis
Higher fibre foods should be chosen instead of lower fibre foods. Fibre can be found in fruits and vegetables (especially in the skin and pulp), wholegrain, granary and wholemeal foods. Increasing fibre promotes gut bacteria health and helps with gut motility. Pain killers often used in the management of SCD crisis can cause constipation so a diet which includes fibre can help relive that.
Intake of saturated fats should be limited. Saturated fats are found in foods such as butter, ghee and coconut oil. A diet high in saturated fats can lead to narrowing of the blood vessels. Sickle shaped red blood cells already have difficulty in passing through vessels so having narrower vessels can make it easier for the sickle shaped red blood cells to clump together and cause a crisis. Swap to unsaturated oils such as vegetable, olive or rapeseed oil.
During times when eating is very difficult, for example during a SCD crisis or hospital admission, foods which are high in energy but small in size should be eaten to help meet that energy gap. Examples of high energy foods include full fat milk and dairy products, nuts, cakes, biscuits etc. These foods are normally not encouraged but it is important that the body gets energy through the most convenient way so during times of low energy and poor appetite, these foods will help meet energy requirements and help to prevent unintentional weight loss.
It was insightful to hear stories from the audience about how they have managed their SCD and how they are dealing with children who suffer from it. Something I failed to consider was how much this condition affects social aspects such as school and work life, taking flights abroad and taking part in sports activities.
It was interesting to hear how little dietetic support is available for people with this condition. My goal was to provided practical advice for health eating in SCD and from verbal feedback I received I can proudly say that I achieved that!! I hope to do work with the Sickle Cell Society and similar organisations again in the future.
Sites for extra reading: