Hi, I'm Jesse Tigg from Chattanooga, Tennessee, I work at Chick-fil-A. I have been diagnosed with Erheim-Chester disease, Erdheim-Chester disease (ECD) is a rare blood disorder that can affect various organs in your body. ECD belongs to a group of rare disorders called histiocytosis. With histiocytosis, there’s an abnormal increase in certain immune cells called histiocytes. Histiocytes are an important part of your immune system.

They’re normally found in many parts of your body, including your bone marrow, bloodstream, skin, lungs, spleen and liver.

With ECD, histiocytes grow out of control. The excess histiocytes may travel to different parts of your body where they’re not usually found and cause tumors. The histiocytes invade tissue and cause damage.

Bones

ECD can cause abnormal hardening in your bones (osteosclerosis), sometimes, resulting in bone pain. Bone hardening, often affecting both legs, usually shows up in imaging to diagnose ECD. Bone pain in both legs is the most common symptom of ECD.

Kidneys

ECD can damage your kidneys and tissue in the body cavity that contains your kidneys and other abdominal organs (retroperitoneum). The invading histiocytes may cause:

Kidney swelling.

Kidney atrophy.

Renal failure (kidney failure).

Endocrine system

Invading histiocytes can damage glands that release hormones that help regulate important processes in your body and many other symptoms.

I've been traveling up to Nashville about once every two weeks because my kidneys are also twice the normal size. On a PET scan, they showed up white instead of see-through. Honestly, I have no idea what that could mean, but I have a hard time standing for longer than 6 hours because of just geneal fatigue

Any little bit will help.