va keyIt provides obstacles and a lot of difficulties that other people might not have to face, but I still think it’s very possible to lead a happy and fulfilling life.

Erica, young adult, Klippel-Trenaunay syndrome

 

The Vascular Anomalies Experience Journal is a collection of stories and personal experiences from patients and families about what it has been like to live with a vascular anomaly. The Journal represents the “collective wisdom” of families and health care providers.

There are a variety of vessels that carry blood throughout the body. There are arteries (which carry blood from the heart to the body), veins (which carry blood from the body to the heart), and capillaries (which connect arteries and veins). There are also lymphatic vessels (which carry fluid called lymph) that are important in the body’s immune system. Sometimes blood and lymph vessels develop abnormally, and these are called vascular anomalies.

There are several types of vascular anomalies which can be categorized in different ways. In consultation with the Vascular Anomalies Clinic (VAC), we have grouped the vascular anomalies presented in this journal into three categories:

  • Vascular tumors: A benign tumor consisting of blood vessels. Diagnoses in this category include reticular hemangioma, cutaneovisceral angiomatosis with thrombocytopenia , kaposiform lymphangiomatosis, and kaposiform hemangiomaendothelioma. Vascular tumors are labeled with pink.
  • Vascular malformation: Conditions caused by an abnormal development of blood and lymph vessels. Diagnoses in this category include lymphatic malformation (LM), venous malformations (VM), arteriovenous malformations (AVM), lymphedema, Gorham disease, and blue rubber bleb nevus syndrome. Vascular malformations are labeled with gray.
  • Combined vascular malformations: Diagnoses in this category include Klippel-Trenaunay Syndrome (KTS), and CLOVES syndrome. Combined vascular malformation are labeled with aqua.

We have color-coded the vascular anomaly stories so that if you are interested in reading stories about a particular diagnostic category, you can do so easily. However, we also hope to show the shared experience of having a vascular anomaly.

While it is common to feel some emotional discomfort associated with reading the stories of children and parents describing their experiences with vascular anomalies, we hope that families may learn from the stories of others facing similar experiences.

Please visit the Glossary to read definitions for words in bold. Visit our Resources page to learn more about family and clinician recommended websites on vascular anomalies.

 

Video Interviews:

Watch an interview with Lauren, mother of RJ, a toddler with Lymphatic Malformation

Watch interviews with clinicians in the Vascular Anomalies Center (VAC) at Boston Children’s Hospital:

Child & Adolescent Stories:

I really can’t stress enough, just having a group of people around you who support you and who you can go to when things aren’t going right and who can encourage you to keep moving on and keep going and that it’s all going to be worth it.

Erica, young adult, Klippel-Trenaunay syndrome

Caregiver Stories:

You just do the best that you can, and you have faith and hope for the best. If you think about it constantly then you won’t sleep. And I try not to let the what-ifs overcome and try to focus on the present and how he is doing now and not what might happen.

Mother of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia

Clinician Insights:

I’ve seen parents that are just amazingly supportive; before the children are born they’ve just accepted, “This is what’s in front of us and we’re going to deal with it, and we’re going to make the best opportunity for our kid.” Then as I watch those kids grow over the years, most of those kids are incredibly resilient and have great lives.

Steven Fishman, MD, Co-Director, Vascular Anomalies Center

A group of parents and health care providers has reviewed all of these contributions for appropriateness.The Vascular Anomalies Experience Journal was created by the Boston Children’s Hospital Departments of Psychiatry and the Vascular Anomalies Center and made possible by the Vascular Anomalies Center Weitzman Family Fund.

Acknowledgements

EJ Editor Note: Please keep in mind that every patient is different. Vascular anomalies have a wide range of presentations and symptoms; discussions of treatments, complications, and timelines may not always apply to you. In order to have the best idea of what you can expect going forward, you should discuss your condition with your health care providers.