Wilson Disease Health Record Software

People with Wilson Disease should keep health records to monitor and manage their condition effectively. Wilson Disease is a genetic disorder that affects the body's ability to metabolize copper, leading to copper buildup in various organs, especially the liver and brain. Symptoms may vary, including fatigue, jaundice, neurological issues, and psychiatric disturbances. By maintaining a health journal, individuals can track symptoms, triggers (such as dietary factors or stress), and their impact on daily life.

Regular measurings of liver function and copper levels through lab tests are crucial to assess disease progression and treatment effectiveness. Keeping a record of prescribed medications, such as chelating agents to remove excess copper, and any side effects can help in adjusting the treatment plan. Additionally, documenting doctor visits, discussions, and treatment recommendations ensures proper communication with healthcare providers and improves overall disease management.

Sample health journal entries that can be entered into Goopatient*:
Date: July 28, 2023
Ensuring a low-copper #diet and avoiding specific foods to prevent copper accumulation. Will follow up with #Dr.Smith in four weeks to review progress and reassess treatment.
Feeling fatigued with mild jaundice noticed in the eyes. Experiencing hand #tremors and difficulty in concentration.
May have accidentally consumed #copper rich foods yesterday.
Took prescribed chelating agent #D-penicillamine this morning after breakfast.
Underwent #liver function tests and serum copper level testing at the hospital.
#Copper level was slightly elevated, and liver function showed mild impairment. Need to monitor closely and adjust medication if necessary.
Attended a check-up with #Dr.Smith, the hepatologist, to discuss current symptoms and lab results. Doctor advised continuing the current treatment and suggested dietary modifications to reduce copper intake.
*These health records are not real, but compiled by Dr. Mike Stanton of the UCLA Health Center. The data that you put in Goopatient is totally private and stored only on your computer.