The lesions are variable in their size and clinical appearance, and they can be found on the skin or in the mouth. The skin lesions are often mistaken for hemangiomas.

About the lesions:

• The lesions on the skin are red to deep purple macules (flat lesions) and papules (raised lesions)
• They range in size from a few millimeters to 5 cm
• Small lesions measure 1 to 10 mm in size and are pink-red, round or oval, flat spots/lesions.
• Large lesions measure 1 to 5 cm and are deep purple, often raised above the skin
• Larger lesions may have crusting, ulceration and bleeding
• In newborns, very small 1 mm deep blue nodules can also be seen, especially on the lower legs

Besides the skin and gastrointestinal tract, multiple other organs can be involved. Lung involvement is the most common organ involved, seen in seven out of 17 of reported patients. Other reported organ involvement includes:

• Synovium-membrane lining a cavity (biopsy-proven)
• Muscle
• Bone
• Bone marrow
• Spleen
• Brain

Lesions in the stomach	Skin lesion	Skin lesion

Children with MLT need to be closely monitored for an extended period of time by a health care team that includes experts from different specialties. The team at Children's Wisconsin includes a specialists from dermatology, gastroenterology, hematology, oncology and surgery. Together, we will develop a plan to treat your child in the best way possible.

Experts have made promising treatment advances in the last couple of years, but some kids do better than others with the treatment. Therefore, your child's treatment may not be the same as another child with the same disorder.

Some Treatment Possibilities Are:

• Your child may need blood products, such as platelets and/or packed red blood cells, to maintain normal blood cell counts.
• There are some drug treatment options that have been used, but they are experimental and have variable results.
• Your child may need surgery, including gastrointestinal surgery, to remove internal MLT lesions and control bleeding.
• Though we are always working toward better treatment options, not one treatment has been found to be most effective in a large group of patients.

Researchers at Children's Wisconsin and the Medical College of Wisconsin have established a national patient registry for MLT. The goal of this registry is to collect patient data from around the world to better understand the cause and natural history of this rare disease, and eventually discover better treatments or even a cure for MLT.

MLT Has Been Misdiagnosed

Because MLT is a complex disorder with many and varying symptoms, it has been misdiagnosed as many conditions, including:

• Hemangiomas
• Blue rubber bleb nevus syndrome
• Diffuse hemangiomatosis
• Hereditary hemorrhagic telangiectasia
• Vascular anomaly with thrombocytopenia
• Kasabach-Merritt phenomenon