Hemangioma: Low Platelets and GI Bleeding

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:

Kelly Duffy, PhD Research Scientist Medical College of Wisconsin Children’s Hospital of Wisconsin Department of Dermatology 9000 W Wisconsin Ave Suite B260 Milwaukee, WI 53226 Phone: 414-456-4078    414-456-6518 Email: kduffy@mcw.edu

Beth Drolet, MD Professor of Dermatology and Pediatrics Medical College of Wisconsin Medical Director of Dermatology and Birthmarks and Vascular Anomalies Children’s Hospital of Wisconsin 9000 W Wisconsin Ave Suite B260 Milwaukee, WI 53226 Phone: 414-266-2868    Fax: 414-266-3315 Email: bdrolet@mcw.edu

NOVA is a 501c3a organization. All donations are tax deductible. NOVA was originally founded as Hemangioma Newsline.
Contact Web Master: Admin@novanews.org     PO Box 38216 Greensboro, NC 27438-8216


This website is certified by Health On the Net Foundation. Click to verify.