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By sharing your stories and data, you will:
help each other
live better and uncover the best ways to manage your health today help researchers
shorten the path to new treatments tomorrow
How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.
What will we do next?
With each piece of data you share, you’re helping PatientsLikeMe and our medical research partners understand:
How do people experience each condition differently, and why?
What improves health and life for different people, and why?
How can we measure that improvement faster and more effectively, and accelerate clinical trials?
Join now to donate your data
…for you, for others, for good.
You have already helped us learn:
Lithium carbonate wasn't helping ALS patients, and we learned it faster than the clinical trials did. Read about it in
Insomnia is more common—in fact worse—for people with chronic conditions. Read about it on the
Interacting with other PatientsLikeMe members improves your health. Read it on
The severity of Parkinson's Disease symptoms changes faster than researchers thought, so clinical trials should be designed differently. Read about it on
What is hereditary coproporphyria?
Hereditary coproporphyria (HCP) is one of the acute hepatic porphyria caused by a defect in the enzyme coproporphyrinogen III oxidase. Acute attacks most often result in neurovisceral symptoms that may include abdominal pain, constipation, and weakness. Less commonly, skin changes may occur.
Common symptoms reported by people with hereditary coproporphyria
Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
June 18, 2018