Has your child been diagnosed with “hemangiomas”, low levels of platelets, and gastrointestinal bleeding?

Your child could have a recently discovered disorder entitled multifocal lymphangioendotheliomatosis with thrombocytopenia (see articles). This disease has also been titled cutaneovisceral angiomatosis with thrombocytopenia in the medical literature. Multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT) is a rare vascular disorder characterized by multiple red- brown skin lesions, often misdiagnosed as hemangiomas. Children with this disease have similar lesions in the stomach an intestines which tend to bleed, especially during the first year of life leading to very low blood counts. The children suffer from  profound thrombocytopenia (low platelet counts, below 30,000-50,000). Although a relatively newly described entity, MLT was and continues to be misdiagnosed as blue rubber bleb nevus syndrome, diffuse hemangiomatosis, Kasabach-Merritt phenomenon, and hereditary hemorrhagic telangiectasia.

The Birthmark and Vascular Anomalies Center at Children’s Hospital of Wisconsin has created an interdisciplinary task force to study infants with vascular disorders and low platelets. The task force is a collective group of clinicians and researchers from diverse pediatric specialties including; dermatology, neonatology, otolaryngology, gastroenterology, hematology/oncology, genetics and pathology. We have designed a registry to collect information on all patients with MLT. The registry will address many unanswered questions regarding risk factors and treatment options for this rare disease. Dr. Paula North, who originally described this disease, will review all biopsy specimens. This data will be used to better understand the disease, design diagnostic criteria, and create treatment guidelines. Ultimately the project will aim to obtain national funding to study the cause of MLT and generate safe and effective therapeutic interventions.

If you think your child has multifocal lymphangioendotheliomatosis with thrombocytopenia/cutaneovisceral angiomatosis with thrombocytopenia please contact us so we can learn more about this disease. This study is approved by our Internal Review Board and will send you a consent form.

Contact Information:

Linda Go, MD

Research Fellow, Pediatric Dermatology

Medical College of Wisconsin

Adress:9200 West Wisconsin Avenue

Froedert Hospital East

Department of Dermatology

Milwaukee, WI 53226

Phone: 414-266-6431            Fax: 414-266-3315

E-mail: lgo@mcw.edu

Beth A Drolet, M.D.

Professor of Dermatology and Pediatrics

Medical College of Wisconsin, Milwaukee Wisconsin

Medical Director of Dermatology and Birthmarks and Vascular Anomalies Children’s’ Hospital of Wisconsin

Address: 9200 West Wisconsin Avenue

Froedert Hospital East

Department of Dermatology

E-mail: drolet@mcw.edu

Phone: 414-805-5304

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