Why have I got a page about this disease? 

My Husband was diagnosed with this disease a few years ago after several years of baffling doctors on both the Isle of Wight and in Southampton Hospital. Since then I have done a lot of research, some of which has helped the medical team looking after him.

What is Erdheim-Chester Disease?

Often shortened to ECD, it is a very rare form of blood cancer. Currently there are about 23 cases diagnosed in the UK. The following information is taken from one of the ECD Global Alliance’s information leaflets. I have not changed the wording as they explain it very well.

Erdheim-Chester Disease

A rare histiocytic neoplasm

Erdheim-Chester Disease (ECD) is a debilitating, underdiagnosed rare condition considered to be a slow-growing blood cancer that may originate in the bone marrow or a precursor cell.

• Histiocytes, cells that normally fight infection, accumulate in tissue and organs.

• Affects different organs in different people, yet can affect virtually every organ system.

Symptoms & Diagnosis

Common early symptoms may include: bone pain in legs and knees, fever, night sweats, weakness, fatigue, excessive thirst & urination, balance issues, lower back pain, bulging of the eye/vision issues, rash, shortness of breath, and heart issues.

Usually diagnosed through biopsy, scans (bone, PET & MRI), and clinical symptoms.

To find out more please click on the logo, this will open the ECD Global Alliance web site in a new page. There is a lot of information on their site, some of it aimed at medical professionals, but most for patients and their friends and family.