mockupThis story is a mockup. The patient shown is fictional, as is every date, result and document below.
Anna's story
How Anna noticed the first symptoms, how the diagnosis was finally pinned down, and what daily life with eosinophilic fasciitis looks like now. Published with Anna's permission, redacted of third-party data.
Released under CC BY-SA 4.0 with Anna's written consent. Third-party identifiers, the names of attending clinicians, and the issuing hospital's logos and registration numbers are blacked out on every page.
12 docs
Medical records released by Anna after third-party redaction
~9 months
From first symptom to a confirmed M35.4 diagnosis
2 lines
Lines of treatment, glucocorticoid-first per published EF practice
/ how it started
The first sign was not pain — it was a forearm that no longer rotated the way it used to.
For Anna, the first sign was not pain. It was the slow, stubborn refusal of a forearm to rotate the way it always had — a piece of the body that, almost overnight, no longer belonged to the person inside it. The skin felt thicker. The morning stiffness lasted into the afternoon.
Three doctors in, the working diagnoses had cycled through overuse, an autoimmune skin disease, and, briefly, a hypochondria-shaped silence at the end of an appointment. The blood count that eventually broke the stalemate showed marked eosinophilia — the single laboratory clue that points away from scleroderma and towards M35.4. From there, the path was clear: rheumatology, MRI, fascial biopsy, diagnosis.
The disease that Anna now lives with has a name, a code, and a small but real body of evidence behind its treatment. That alone, as Anna has said, is worth more than people without a rare disease usually realise.
— Anna, as told to the site author
/ timeline
From first symptom to a stable plan.
Four steps. Anna's timeline is not the author's, and the author's is not anyone else's — but the shape repeats across every M35.4 case the literature has documented.
01
Months 1 → 3
First symptoms, first doctors
Anna noticed the change but did not yet have a name for it. Primary-care visits, a working diagnosis that did not fit, and the slow accumulation of evidence that this was not what anyone first thought.
02
Months 3 → 6
Eosinophilia, then a rheumatologist
A peripheral blood count drew attention to the eosinophil line. A referral followed. The first rheumatologist Anna saw recognised the clinical pattern within two appointments and ordered an MRI of the affected limb.
03
Months 6 → 9
MRI, fascial biopsy, diagnosis
T2-STIR imaging of the affected limbs showed the fascia lit up. The biopsy confirmed the dense lymphoplasmacytic and eosinophilic infiltrate sparing the dermis and muscle. ICD-10 M35.4 entered Anna's records.
04
Month 9 → today
Treatment, taper, daily life
First-line glucocorticoids, then a steroid-sparing agent. Anna is now on a stable maintenance regimen and has returned to most of the things that the worst months had taken away.
/ documents released
Three panels, redacted.
A small slice of Anna's records — the three documents that, read in order, capture the diagnostic pivot. Names, dates of birth and identifying numbers are blacked out on every page.
Immunoglobulins (IgG, IgA, IgM, IgE)
ANA / ENA / anti-Scl-70 — negative
/ imaging
MRI of the affected limb.
T2-STIR is the workhorse sequence for fasciitis. The post-contrast T1 confirms inflammatory enhancement of the deep fascia, sparing muscle and subcutaneous tissue — the imaging signature that closed Anna's diagnostic work-up.
Affected limb — T2-STIR, coronal
Affected limb — post-contrast T1, axial
/ key admission
The diagnostic admission.
One discharge summary stands in for the rest. It is the formal record of Anna's diagnostic hospitalisation — the week that named the disease.
01
Rheumatology 7 days
Diagnostic admission · fascial biopsy
Full-thickness skin-to-muscle biopsy of the affected forearm under local anaesthesia. Histopathology: thickened, inflamed fascia with a dense lymphoplasmacytic and eosinophilic infiltrate, dermis and muscle spared. Oral prednisolone 1 mg/kg/day initiated before discharge. Follow-up at four weeks.
/ treatment
First line, then a steroid-sparer.
Eosinophilic fasciitis has no licensed therapy. Practice is reconstructed from cohort studies and case series. Anna's regimen follows the most-evidenced sequence: oral glucocorticoid first, methotrexate added when the taper proved unstable.
I → II
Oral prednisolone, then subcutaneous methotrexate
drug class Glucocorticoid + DMARD (folate antagonist)
period Month 8 → present
Eosinophil count normalised at week 4. Methotrexate 15 mg/week added at month 6 to permit a steroid taper. Maintenance: prednisolone 5 mg/day + methotrexate 15 mg/week. Disease stable for the past 14 months.
/ clinical photograph
Six months into treatment.
/ in Anna's words What Anna would tell
What Anna would tell
the next patient.
“The hardest part was not the diagnosis. The hardest part was the months before the diagnosis, when no one believed there was anything wrong.” Anna has said this in three different ways across the conversations behind this page. It is the closest thing to a moral the story has.
If you are reading this and your own symptoms have been brushed off, Anna wants you to know: ask for an eosinophil count. It is a cheap test. It will not, on its own, prove anything — but it can be the single number that finally points the differential in the right direction.
Mockup notice — this page is a demonstration of the case-page template. The narrative is composite; the medical pattern (eosinophilia, MRI, fascial biopsy, glucocorticoid-first treatment) is consistent with the published literature on M35.4. Document codes, dates and outcomes are placeholders.
Read the other stories, or write to the site author.
/ mockup
This patient story is a mockup
What you see below is only a mockup — a preview of how an individual patient's story might look in the future.
It does not describe a real person. The patient shown here is fictional, and so is every date, result, document and image on the page.
Nothing on this page is a medical record, and nothing on it is medical advice.
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