This reference site is to help people who have Eosinophilic Fasciitis (Shulman’s Syndrome). It collects and shares knowledge and statistics on this disease. It has no commercial interests. On this page are links to medical sites, academic documents and patient forums.
The Drugs page lists the drugs being prescribed for EF and the studies in support of each drug.
The Studies page contains the guides, group studies, and interesting case reports. It is where most of the knowledge of this disease can be found.
The Statistics page displays in figures and charts what around 400 EF patients have said about their treatment and progress. It also gives an estimate of the prevalence of EF in the USA.
The Treatment page shows what is working for patients.
Patient forums (most active first)
Facebook (an interactive community of EF patients)
PatientsLikeMe (collecting data for research)
Inspire (some good postings by EF patients)
Medical sites (summaries)
MedlinePlus (brief summary)
Medscape (treatment)
NORD (more details)
GARD (links to more sites)
Apfed (sample patient story)
Academic sites
National Library of Medicine
Oxford Journals
Academia.edu
Bielefeld University Library
UpToDate
[updated: 2024-01-29]