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General Rehabilitation

Unique Manifestations of a Rare Hemophagocytic Lymphohistiocytosis Case: A Multidisciplinary Rehabilitation Approach to Quadriparesis and Facial Paralysis

Thursday, October 23, 2025
12:45 PM - 2:15 PM MT
Location: Kiosk 1

    Poster Presenter(s)

  • Kevin Song, DO

    Resident
    New York University Grossman School of Medicine PM&R Program
    New York, New York

    • Co-Author(s)

  • CM

    Chun Maung, DO

    Resident
    New York University Grossman School of Medicine PM&R Program, New York

  • Gabrielle N. Avancena, MD (she/her/hers)

    PGY-2 Resident Physician
    New York University Grossman School of Medicine PM&R Program
    New York, New York

  • SP

    Sofiya Prilik, MD

    Clinical Director of Cardiac and Pulmonary Rehabilitation
    Nyu/rusk Institute Of Rehabilitation Med
    Woodmere, New York

Disclosure(s):
Kevin Song, DO: No financial relationships to disclose
Gabrielle N. Avancena, MD: No financial relationships to disclose
Case Diagnosis: Hemophagocytic Lymphohistiocytosis (HLH)

Case Description or Program Description: A 29-year-old male presented with fever, chills, headache, and generalized pain whose symptoms rapidly worsened with complications of airway edema, facial swelling and weakness, renal failure, pneumomediastinum, pneumothorax, and quadriparesis. He was found to have severe pancytopenia, hemolysis, and diagnosed with HLH on bone marrow biopsy. Once stabilized, he was admitted to acute rehab.

Setting: Acute Inpatient Rehab

Assessment/Results: Initial rehab exam was significant for facial diplegia, tongue weakness, dysarthria, dysphagia, peripheral lagophthalmos, impaired vision, diminished distal extremity sensation, and quadriparesis worse in lower extremities. He required mod-assist for bed mobility, transfers, and ambulation of 30-feet with platform walker. Max-assist with bathing and toileting. PEG for severe dysphagia.

He underwent a multidisciplinary rehab course with contributions from ophthalmology, hematology, rheumatology, ENT, PT, OT, SLP, and psychology. Plan was devised to include the use of protective eyewear with tarsorrhaphy and eyelid weight implants, airway monitoring, HLH markers monitoring and medication adjustments, and manually-assisted chewing techniques and jaw therapy to help improve swallowing.

He made significant gains in acute rehab. On day of discharge, he was independent with bed mobility, transfers, upper- and lower-body dressing, and ambulation of 220-feet with a rolling walker. He was also advanced to an easy-to-chew diet.

Discussion (relevance): This is the first reported case of a rare disease in HLH leading to an even rarer presentation of functional deficits stemming from HLH CNS involvement versus critical illness myoneuropathy. The patient’s unique presentation of facial and trigeminal nerve palsy, previously undocumented with these conditions, posed an unusual challenge for recovery, necessitating a multidisciplinary collaboration and specialized rehabilitation strategies.

Conclusions: This case highlights an exceptionally unusual and complicated course of HLH manifestations, emphasizing the importance and success of multidisciplinary rehabilitation in restoring function. These findings can hopefully be used to guide the management of similar cases in the future.