Lymphatic Malformations

Introduction

Lymphatic malformations are rare conditions in which there is abnormal prenatal development of the lymphatic system that can affect any body part. These conditions can be detected on prenatal ultrasounds but cannot be cured.

What are Lymphatic Malformations?

The term lymphatic malformation describes abnormal prenatal development of the lymphatic system. A malformation can affect any body part including the face, neck, body trunk, extremities, bones, and other body systems.

Sometimes these conditions are detected by ultrasound before birth, are obvious at birth, or become obvious later as the child develops.

These conditions which require specialized type of treatment other than those normally used for primary and secondary lymphedema, are beyond the scope of Lymph Notes and are not discussed here.

However in an effort to help a parent of a child with lymphatic malformations, the Lymph Notes team has located web sites that can be helpful resources for the parents of children affected by these conditions.

Resources

Because these conditions are rare, it is difficult to find accurate information about the conditions and treatment methods. Although a site is listed here, it is still the responsibility to evaluate and judge the accuracy of its content.

• The National Organization of Vascular Anomalies (NOVA), is a nonprofit organization providing assistance to individuals affected by hemangiomas & vascular malformations. Like Lymph Notes, this website, has met the quality standards required to be entitled to display the icon of HON (Health on the Net Foundation). This site, which is maintained by a board of physicians, includes a section specific to lymphatic malformations. Here you can find information and links to physicians who specialize in treating these conditions.
• An excellent site for parent-to-parent information and support is the Stay Calm website. CALM, an acronym for Children Anguished with Lymphatic Malformations, is a support group that was founded in 1993 to help families afflicted with this rare and misunderstood disfiguring disorder. To learn more about this condition, and the activities of the organization, visit the Stay Calm web site.
• Another helpful parental location is the Little Leakers website. Here families with a child with any type of lymphatic malformation reach out to provide information, tips, and support that are helpful to parents, family members and friends

Reference

"Advances in Our Understanding of the Genetics of Lymphoedema: From Diagnosis to Treatment" by Professor Neil B. Piller. Lymph Link, Vol 20, #2 pages 1-31.

© LymphNotes.com 2009. This information does not replace the advice of a qualified health care professional.

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Category: What is Lymphedema? Updated: 2009-11-13