Erdheim Chester Disease is an extremely rare disease - studies reveal that there have been only 300 reported cases worldwide since 1930.
People suffering from ECD have too many histiocytes - a histiocyte is a type of white blood cell which normally helps fight infection. As a result of this excessive production, body tissues become thickened and hard, like scars.
There is no known cause and ECD is not infectious, inherited or malignant.
Bone Pain
Diabetes Insipidus
Lung Problems
Organ Failure
Lack of co-ordination
Eye Problems
Biopsy, x-ray, CT, MRI, PET-CT
Limited but can include dialysis, ventilation, chemotherapy and steroids.
ECD Global Alliance is an international patient support group for both patients and carers. It also assists doctors with diagnosis and treatment. For further information please visit www.erdheim-chester.org
Dr Simon Dedrick