‘This is the beginning of a door opening that will never close again, ‘said Suzanne Ruggles, founder and CEO of Full Circle Fund Therapies, an award-winning hospital- based integrative medicine charity, after she had made happen the world’s first conference on nutrition in sickle cell on June 18.
You can watch the conference here
https://www.fullcirclefund.org.uk/
Chamberlain Dunn was delighted to be part of it and to help the Fund organise the conference virtually so that it was able to reach over 200 people from many countries. The ‘star’ of the show was dietitian Claudine Matthews who is a nutrition consultant in sickle cell and passionate about empowering people to understand the nutritional implications and the disease. ‘Information without action means nothing,’ she said in a two hour tour de force, inspiring health professionals, patients and families alike.
Sickle cell disorder is a complex, life-long, genetic red blood cell disorder in the UK affecting around 15,000 people, mostly of African or African-Caribbean origin, although the sickle gene is found in all ethnic groups. It is characterised by repeated vaso-occlusive crises, which cause severe pain, impact patients’ quality of life and increase the risk of organ damage, stroke, acute chest syndrome, blindness, bone damage and early death. Annually in the UK, approximately 270 babies are born with the condition, globally the WHO estimates around 300,000 babies are born with severe forms of the disease.
At the moment, nutritional advice is not part of the standard clinical management and patients and their families have to find out for themselves. Claudine hopes that her research will help provide guidelines about how dietary advice can be part of the management of the disease. She made it clear that this means patient empowerment and an holistic approach to managing the disease.
‘A phenomenal conference’, was the verdict. Claudine left the words of Maya Angelou ringing in our ears: ‘ Stand up strong and remember who you are, that you tower over your circumstances.’
.