A few months ago I attended an online sickle cell conference. The theme was: “The Evolution of Diet in Sickle Cell Anemia in the UK: A Call to Action”. The conference was hosted by the Full Circle Fund, an award-winning hospital integrative medicine charity that, in collaboration with Claudine Matthews, a registered sickle cell nutritionist in the UK, hosted the world’s first sickle cell nutrition conference.
As someone who talks a lot about “food as my medicine,” I was curious to see what the guest speaker had to say. After the conference, I contacted the guest speaker Claudine M. I was able to ask Claudine to contribute to the column. Let me first introduce Claudine:
Claudine is a registered nutritionist with the HCPC Council in the UK and has over 13 years of clinical experience in the NHS, both in acute and community settings. Previously, she worked as a lecturer in dietary practice and currently works as a nutritionist for health and wellbeing in a primary care network. For the past seven years, Claudine has pioneered the sickle cell anemia nutritional landscape and has published numerous articles on the subject. Claudine was invited to write the world’s first National Nutritional Standards for sickle cells on behalf of the Sickle Cell Society.
Claudine has a Masters Degree in Healthcare Education and Clinical Leadership and is currently doing her 5th year PhD on Sickle Cell Nutrition. She was the keynote speaker at the inaugural Nutrition conference at Sickle Cell in London. In addition, Claudine was invited to speak at international sickle cell conferences and provide dietary expertise for several global nutrition projects in sickle cell disease.
Claudine believes that nutrition is an overlooked treatment option throughout the life-course of sickle cell patients. Let’s read more about what Claudine has to say:
Sickle cell is the fastest growing and most common genetic disease. Sickle cell has both medical and nutritional implications as a direct consequence of the major clinical features of the chronic disease. However, diet is an overlooked aspect of treating sickle cell patients. Medical management of sickle cell anemia is preferred over nutritional management, which leaves many sickle cell patients vulnerable to their own nutritional needs. More importantly, the diet affects sickle cell patients throughout their lives. As part of the current service provision, many sickle cell patients continue to have limited access to nutritional care from a nutritionist.
We know the main problems in sickle cell patients, as described in the literature, retarded growth, retarded puberty, and impaired immune function; under Diet and nutritional deficiency are identified as the most important nutritional problems.
Each phase of the life of a sickle cell patient in turn harbors its own nutritional risks for the patients who need to be treated. Managing nutritional risks will help reduce the risk of increased morbidity, poor quality of life, and poor patient health and wellbeing. The following is a brief look at the nutritional problems over the life course of sickle cell patients.
Pediatrics: Pediatric patients are more prone to retarded growth and development, with potentially serious consequences if left untreated. Wasting (low weight for height) and stunting (low height for age) are problems associated with chronic malnutrition with serious health consequences for the healthy development of those affected. For this reason, sickle cell pediatric patients benefit from access to nutritional services as part of their standard clinical management.
Disease-related malnutrition is a real risk for children with sickle cell anemia due to their increased energy and protein needs, as discussed above. Pain can affect a child’s appetite and overall food intake and should therefore be monitored closely.
Teenagers: The current literature identifies adolescence as a time of high nutritional risk for sickle cell patients for several reasons. This may be because they have to find their way around the health system on their own. You may not take your prescribed medications, particularly penicillin, and are at increased risk of infection. You may have difficulty adjusting to teenage years and the changes due to puberty, but sickle cell patients are at risk of delayed puberty and sexual development. Their diets can be suboptimal and put at increased risk of nutritional deficiencies, which increases their risk of developing disease-related malnutrition.
Adults, pregnancy and age: Moving on to adults, pregnancy and aging. The symptoms of sickle cell anemia are associated with an increased risk of morbidity and mortality. In adults, complications may arise as a result of the pathophysiology of the condition that may increase the nutritional needs of patients. Pregnancy opens up extensive nutritional needs for sickle cell patients, both for the mother and for the unborn child and for the general health and safety of the pregnancy. Sickle cell frailty doesn’t just affect the elderly. The frailty of sickle cell anemia is applicable to younger people awaiting hip replacement as a result of avascular necrosis. AVN can have a devastating impact on the quality of life of sickle cell patients and lead to severe disability for the patient. Other problems include gastrointestinal problems, common side effects of the medications patients with sickle cell anemia must take to relieve their pain, and other symptoms such as iron chelation medication.
Diploma: Neglecting diet in sickle cell anemia and neglecting the factors that increase the nutritional needs of sickle cell patients throughout their lives increases the nutritional risk of these many vulnerable patients. Hence, the nutritional risks of sickle cell patients need to be considered in order to empower and empower patients to choose healthy diets and lifestyles to not only improve their quality of life but also reduce their health burden.
If you would like to get in touch with me on this article or on the subject of sickle cell, you can do so by email: [email protected] and visit my blog: www.howtolivewithsicklecell.co.uk. The e-copy of my book on Sickle Cells – How to Live With Sickle Cells is available at www.toladehinde.com, and if you’d like to buy a paperback version it is available from Amazon.
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