About Erdheim-Chester disease
Erdheim-Chester disease (ECD) is a rare blood cancer that causes a buildup of white blood cells called histocytes. It can affect many organs and cause:
- Bone pain
- Increased thirst and urination
- Problems with the skin, eyes, or nervous system.
It usually effects males more than females and is generally diagnosed between the ages of 40 to 70 years. The prognosis for ECD depends on the extent of disease, there is currently no cure but with treatment it can be controlled.
Diagnosis is made based on a number of tests, including biopsies, imaging, and acquired gene testing.
Treatment depends on how the disease affects you and may include targeted therapy, immunotherapy, or chemotherapy. Erdheim-Chester Diseases Global Alliance (ECDGA) is a nonprofit organisation supporting patients, caregivers and families affected by ECD. Please visit their website for comprehensive information about ECD.
Living well with Erdheim-Chester disease
How ECD affects your everyday life will depend on many factors. It could be that you are returning or managing work, trying to exercise or managing your nutrition. There are some helpful resources and information to guide you – Living well with blood cancer. The Online Blood Cancer Support Service has learn modules on long term side effects, transition to the new normal, cancer related fatigue and more.
