Melda’s Eye Disease and the Search for a Diagnosis

Updated 28 September 2026

Melda is 12 years old and has lived with recurrent inflammation and scarring of the conjunctiva in both eyes since early childhood. The first adhesion between the eyelid and the eye appeared in her right eye in November 2016. A similar adhesion developed in her left eye shortly afterwards. Both were present before her only ocular biopsy, performed in April 2017.

The disease has fluctuated over the years. At one point, the right eye became quiet while the left eye continued to flare. Repeated damage to the left cornea has led to severely reduced vision. In September 2026, the right eye developed a serious flare with increasing adhesion and a threatened cornea. Because Melda relies mainly on this eye for sight, understanding and controlling the disease is urgent.

The underlying cause has not yet been established. This website brings together her clinical history, photographs, medical records and research that may help specialists assess her case.

Melda’s clinical course

• 2016–2017: The first adhesions developed in the right eye in November 2016 and then in the left. We first visited our GP. Melda has been under the care of LUMC since January 2017. An ocular biopsy was performed in April 2017. Early examinations described inflammatory conjunctival lesions, including granulomatous or pseudomembranous changes.
• 2018–2020: Eye inflammation continued to recur. Swelling of the left lacrimal gland was documented in 2019. Melda also had intermittent skin reactions. Photographs show episodes at several dates, although similar reactions occurred at other times without photographs.
• 2021–2024: The left eye developed repeated corneal surface injuries and thinning. Treatment included different anti-inflammatory and lubricating eye drops, antibiotics during corneal episodes, and protective contact lenses. A scleral lens was attempted, but inserting and removing it was very difficult when Melda was younger. In March 2024, doctors documented severe thinning of the left cornea and concern about a possible covered perforation.
• 2025–2026: Treatment continued with combinations of eye drops and systemic medication. While Melda was receiving methotrexate and adalimumab, an increase in the adhesion in her right eye was documented on 2 September 2026.
• 2026: A small biopsy from behind Melda’s right earlobe, taken on 6 May 2026, showed abscess-forming inflammation. The pathologist considered infection the leading possibility, although no microorganisms were seen with Gram or PAS staining. No granulomas or lobular capillary proliferation were found in the sampled tissue. This was a routine histology biopsy, not a direct immunofluorescence test. Its relationship, if any, to Melda’s eye disease remains unknown.
• September 2026: Melda was admitted to hospital because of a severe flare in the right eye. Examination documented an adhesion on the inner surface of the lower eyelid, inward turning of the lid and lashes, and a corneal surface defect. Some lashes were removed and a bandage contact lens was placed. Her mother reports that the defect has since closed and that oral prednisolone is helping. Methotrexate and adalimumab were stopped, and prednisolone and mycophenolate mofetil (MMF) were started. The result of the September conjunctival culture was not yet known to the family at this update.

What is being investigated?

Her doctors are considering several possible explanations, including mucous membrane pemphigoid (MMP), linear IgA disease, conjunctival lichen planus, ligneous conjunctivitis and other causes of cicatrising conjunctivitis. The Splendore–Hoeppli phenomenon has also been discussed in connection with the earlier lesions. These are possibilities under investigation, not diagnoses that Melda has been given.

One important open question is whether fresh tissue should be examined by direct immunofluorescence (DIF). No DIF result from fresh tissue has been identified in the records we have shared. In September 2026, dermatology discussed possible biopsies from oral mucosa near the corner of the mouth and unaffected skin on the inner upper arm. These would not be eye biopsies. Ophthalmology has expressed concern about taking another ocular biopsy.

Dermatology also noted that it is unclear whether one normal plasminogen activity result is enough to exclude ligneous conjunctivitis in Melda’s case. Her treating specialists will decide which tests are appropriate and how any results should be interpreted.

Selected research relevant to the questions in Melda’s case

These publications concern other patients and diagnostic methods. They provide context for discussion with specialists; similarity to a published case does not establish Melda’s diagnosis.

1. Ramos-Dávila and colleagues, 2025 — Childhood-onset ocular MMP and a review of published cases. Reports a 12-year-old girl with conjunctival scarring and peripheral ulcerative keratitis, and reviews childhood cases with ocular involvement. It is relevant to the question of whether MMP can occur in a child with prominent eye disease.
2. Lavallée and colleagues, 2013 — Childhood MMP with exclusively ocular involvement. An earlier report of a girl whose MMP affected her eyes without other reported sites. It shows why the absence of confirmed mouth or skin disease cannot, by itself, settle the diagnostic question.
3. European MMP diagnostic guidelines, 2021. Discusses DIF, antibody testing and the assessment of suspected ocular MMP. It also explains why biopsy results require interpretation alongside the clinical findings.
4. Lopez and colleagues, 2022 — Buccal biopsy in suspected ocular MMP and Rashid and colleagues, 2021 — Diagnostic testing for MMP. These studies are relevant to the proposed investigation using oral mucosa and to understanding what different tests can contribute.
5. Haidar and colleagues, 2026 — Childhood linear IgA disease with ocular involvement. Describes a different autoimmune condition in a young child with corneal disease. It is relevant to the differential diagnosis, but its presentation is not identical to Melda’s.
6. Orhan and colleagues, 2006 — Conjunctival Splendore–Hoeppli phenomenon in a three-year-old child. Describes conjunctival nodules with this tissue pattern in another child. It is relevant to Melda’s early lesions, while the cause of her continuing scarring still needs assessment.
7. Vazirani and colleagues, 2020 — Review of chronic cicatrising conjunctivitis. An overview of the different conditions that can cause progressive conjunctival scarring and how clinicians distinguish between them.

Photographs and medical records

Photographs taken by Melda’s family show how her eyes have changed over time. We also have dated photographs of skin reactions. Further medical records are available in the protected section of this website.

We hope this overview helps clinicians understand Melda’s course, compare it with the published literature and identify useful next steps in finding the cause of her eye disease.