Ziggy Knows… Myth: ECD only affects bones. Fact: ECD can affect many organs throughout the body and few have no bone involvement. Every person’s experience is unique. That’s why expert evaluation and individualized care are so important....
Ziggy Knows… People with ECD spend years searching for answers. Research has shown that after symptoms first appear, it takes an average of 4.2 years to get an ECD diagnosis. Learning about ECD can help shorten that journey for future patients. Earlier...
Ziggy Knows… There isn’t one symptom that defines ECD. Some people experience bone pain, fatigue, excessive thirst, balance problems, skin changes, shortness of breath, or other symptoms. Every patient’s journey is different. Knowing the signs can...
Ziggy Knows… ECD is considered ultra-rare. Researchers found that about 1 to 2 out of every 10 million people were newly diagnosed with ECD in the US during 2021 and 2022. Many healthcare professionals may never encounter a patient with ECD during their careers,...
Ziggy Knows… Erdheim-Chester Disease (ECD) is an ultra-rare blood cancer that can affect many different parts of the body, including the bones, heart, brain, kidneys, lungs, skin, eyes, and other organs. Because it can look different from person to person, ECD...
