Our Health Topics

Epitheliod hemangioendothelioma

  • Overview

    At Children’s Hospital Boston, we know how difficult a diagnosis of epithelioid hemangioendothelioma (EHE) can be, both for your child and for your whole family. It’s a rare tumor that’s not widely understood.

    Referring to EHE as a rare tumor often leads to discussion of EHE as a  cancer. A tumor is any abnormal growth, while cancer has additional properties, including spreading to distant parts of the body and rapid growth. In some patients, the tumor is stable and sometimes goes away without treatment. In others, the tumor may be more aggressive, metastatic (meaning that it can spread) and even fatal.

    As is the case for all rare diseases, we recommended that an experienced team of specialists assist in ensuring your child has the correct diagnosis.

    Here’s what you need to know:

    • EHE is a rare vascular tumor that arises from the lining of your child’s blood vessels.
    • It can appear anywhere in the body, but common sites are the liver, lungs and bones.
    • The cause is currently unknown.
    • The tumor behaves differently in different people.
      • Some are stable for years.
      • Some go away without treatment.
      • Some grow rapidly, spread and can even be fatal.
    • There are several treatments available for epithelioid hemangioendothelioma. 

    How Children’s Hospital Boston approaches epithelioid hemangioendothelioma

    Diagnosing EHE can be difficult for primary care physicians simply because it’s such a rare condition.

    In fact, an experienced vascular anomalies center is essential to the care of children with EHE. Such centers have a diagnostic team of radiologists and pathologists and a treatment team of surgeons, interventional radiologists and medical specialists (often hematologists/oncologists) to provide optimal care. However, some centers lack all of the necessary specialists for both diagnosis and treatment.

    The Vascular Anomalies Center at Children’s Hospital Boston is the largest in the world, meaning that we evaluate more patients with rare vascular anomalies than anyone else. We consult on the care of children (and adults) with EHE around the world after reviewing their cases in Boston to confirm the diagnosis and advise about treatment options. Once we reach the proper diagnosis, we then determine what sort of treatment your child needs.

    “Helping Your Child with Medical Experiences: A Practical Parent Guide”

    Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (Adobe Acrobat is required) and read about topics including:

    • talking to your child about his condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child’s illness
    • adjusting to life after treatment

    Epithelioid hemangioendothelioma: Reviewed by Cameron Trenor III, MD
    © Children’s Hospital Boston, 2010


  • In-Depth

    It can be hard to find accurate information about epithelioid hemangioendothelioma (EHE) because it’s such a rare condition. Here at Children’s Hospital Boston, we understand the condition—both what it is and what it’s not—and we know when and how to treat it.

    As is the case for all rare diseases, we recommended that an experienced team of specialists assists in ensuring your child has the correct diagnosis.

    Here’s what you need to know:

    • EHE is a rare vascular tumor that arises from the lining of your child’s blood vessels.
    • It can appear anywhere in the body, but common sites are the liver, lungs and bones.
    • The tumor behaves differently in different people.
      • Some are stable for years.
      • Some go away without treatment.
      • Some grow rapidly, spread and can even be fatal.
    • There are several treatments available for epithelioid hemangioendothelioma. 

    What does it mean that my child has EHE?

    EHE is a tumor that forms from abnormal blood vessels. Your child may have a tumor that remains stable for years; on the other hand, your child could have a tumor that grows rapidly and causes many health problems. Therefore, the important first question to ask is whether a newly discovered tumor needs immediate treatment, or is safe to watch for a period of time.

    What causes EHE?

    The cause is currently unknown. EHE is not inherited—therefore, relatives and future children are not at increased risk for developing EHE.

    How common is it?

    It’s very rare, likely occurring in about one in 1,000,000 people. Just a few hundred people in the United States are diagnosed with EHE each year.

    When does it appear?

    EHE typically appears in older teens and young adults, though the tumor may be diagnosed in younger children or older adults.

    Who has EHE?

    It’s slightly more common in women than in men.

    Is EHE cancer?

    Some say “yes” and some say “no.”

    • In some patients with more aggressive disease, EHE behaves like a low-grade (slow-growing) cancer.
    • In other patients with stable or shrinking tumors without treatment, EHE behaves more like a benign (non-cancerous) vascular tumor.

    The important point is that certain characteristics of your child’s EHE will determine if it is aggressive and requires more aggressive treatment. These characteristics include its location and the appearance of the biopsy under a microscope as well as whether it has changed in size and/or spread to other tissues.

    Symptoms

    Often, EHE can be misdiagnosed by your child’s primary physician, simply because the condition is so rare. Additionally, there are no specific symptoms for EHE.

    So what will my child’s symptoms depend on?

    Depending on the location of the tumor, irritation of nearby tissues can lead to discomfort or abnormal results from blood tests.

    • Tumors in the liver may cause abdominal pain (the liver is in the right-upper abdomen), weight loss, blood work alterations or an abdominal mass.
    • Lesions in the lung may cause chronic dry cough, shortness of breath or other problems.
    • EHE in the bone can cause pain or weaken the bone, leading to increased risk of fracture.
    • Skin lesions may be confused with other skin conditions at first. Often, doctors do not consider the diagnosis of EHE involving the skin until after a biopsy.

    If your child has an unusual rash, or if imaging or a biopsy have raised the possibility of EHE, you should seek care at an experienced vascular anomalies center.

    Keep in mind, though, that this condition is exceedingly rare, and the presence of any of these symptoms does not necessarily mean that your child has EHE.

    Where do the tumors appear?

    Because EHE arises from blood vessels (which are found throughout your body), EHE tumors can appear anywhere in your child’s body. They’re often found in the liver, lungs and bones.

    Long-term outlook

    What is the long-term outlook for my child?

    EHE is such a rare condition that it’s difficult to determine the long-term outlook for your child.

    The tumor also behaves very differently in different people.

    • Some are stable for years.
    • Some go away without treatment.
    • Some grow rapidly, spread and can be fatal.

    Every child is unique and your care team will work with you to develop a treatment plan that works for your family.

    The prognosis for your child greatly depends on:

    • the extent of the disease (how large the tumor is and whether it has spread)
    • the size and location of the tumor determine whether we can surgically remove it
      • Tumors arising in the liver and those that are in multiple locations appear to be aggressive.
    • the results of the biopsied tissue
      • Areas of cell death and markers of cell replication may indicate more aggressive tumors.
    • response to therapy
    • the overall health of your child
    • your child's tolerance of specific medications, procedures, or therapies
    • new developments in treatment

    Children with EHE often need multidisciplinary care. Some specialists your doctor may recommend for your child include the following (all of these are available at Children’s, and all specialists have experience with EHE):

    • hematologist/oncologists
    • dermatologists
    • plastic surgeons
    • general surgeons
    • interventional radiologists
    • orthopedic surgeons
    • gastroenterologist/hepatologists
    • pulmonologists

    Will my child’s tumor come back after treatment?

    If we can completely remove the tumor surgically, it will most likely not come back. However, complete removal is not often possible due to the size, location or multiple sites of tumors. Remaining tumors may require further therapy and there is a risk of tumors coming back after treatment.

    What do we do after treatment is over?

    If your child’s doctor recommends chemotherapy or radiation therapy, your child will have comprehensive annual follow-up appointments to check for long-term problems in our survivorship clinic. A typical follow-up visit may include some or all of the following:

    • a physical exam
    • laboratory testing
    • imaging scans

    FAQ

    Q: What is epithelioid hemangioendothelioma (EHE)?
    A:
    EHE is a rare vascular tumor that arises from the lining of your child’s blood vessels.

    Q: Is it cancer?
    A:
    Some say “yes” and some say “no.”

    • In some patients with more aggressive disease, EHE behaves like a low-grade (slow-growing) cancer.
    • In other patients with stable or shrinking tumors without treatment, EHE behaves more like a benign (non-cancerous) vascular tumor.

    The important point is that certain characteristics of your child’s EHE will determine if it is aggressive and requires more aggressive treatment. These characteristics include its location and the appearance of the biopsy under a microscope as well as whether it has changed in size and/or spread to other tissues.

    Q: What does it mean that my child has EHE?
    A:
    EHE is a tumor that forms from abnormal blood vessels. Your child may have a tumor that remains stable for years; on the other hand, your child could have a tumor that grows rapidly and causes many health problems.

    • Therefore, the important first question to ask is whether a newly discovered tumor needs treatment or is safe to watch for a period of time.

    Q: What causes EHE?
    A:
    The cause is currently unknown.

    • EHE is not inherited—therefore, relatives and future children are not at increased risk for developing EHE.

    Q: So what will my child’s symptoms depend on?
    A:
    Depending on the location of the tumor, irritation of nearby tissues can lead to discomfort or abnormal results from blood tests.

    • Tumors in the liver may cause abdominal pain (the liver is in the right upper abdomen), weight loss, bloodworm alterations or an abdominal mass.
    • Lesions in the lung may cause chronic dry cough, shortness of breath or other problems.
    • EHE in the bone can cause pain or weaken the bone, leading to increased risk of fracture.
    • Skin lesions may be confused with other skin conditions at first. Often, doctors do not consider the diagnosis of EHE involving the skin until after a biopsy.

    If your child has an unusual rash or if imaging or a biopsy have raised the possibility of EHE, you should seek care with an experienced vascular anomalies center.

    Keep in mind, though, that this condition is exceedingly rare, and the presence of any of these symptoms does not necessarily mean that your child has EHE.

    Q: What is the long-term outlook for my child?
    A:
    EHE is such a rare condition that it’s difficult to determine the long-term outlook for your child.

    The tumor also behaves very differently in different people.

    • Some are stable for years.
    • Some go away without treatment.
    • Some grow rapidly, spread and can be fatal.

    Every child is unique and your care team will work with you to develop a treatment plan that works for your family.

    Q: Will my child’s tumor come back after treatment?
    A:
    If we can completely remove the tumor surgically, it will most likely not come back. However, complete removal is not often possible due to the size, location or multiple sites of tumors. Remaining tumors may require further therapy and there is a risk of tumors coming back after treatment.

    Q: How do doctors diagnose EHE?
    A:
    Diagnosing EHE is a process that happens in a few stages because the skin lesions associated with EHE are often confused with more common skin conditions.

    • Your doctor will evaluate any internal lesions are evaluated based on the symptoms caused by the locations of EHE tumor(s).
    • Your doctor may recommend an imaging study based on physical signs or results from blood tests.
      • An experienced radiologist may consider EHE based on imaging.
    • Tumors seen on imaging are often biopsied and a pathologist may be the first person to consider the diagnosis of EHE.
      • Biopsy is nearly always needed to confirm the diagnosis of EHE.

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best next steps to take.

    Q: What are the treatment options for my child?
    A.
    EHE is a complex condition. Your care team (your child’s doctor and an experienced vascular anomalies specialist) will outline the benefits of all the treatment options available with you. For more detailed information, see the Treatment & Care section.

    At Children’s, we consider you and your child integral parts of the care team, and not simply recipients of care. You and your care team will work together to customize a plan of care for your child.

    Q: What makes Children’s different?
    A:
    We have the world’s largest vascular anomalies center, home to specialists who diagnose and treat more rare vascular conditions than at any other hospital. Our center has multidisciplinary expertise in both diagnosis (radiology and pathology) and treatment (surgery and medical specialties, including hematology/oncology).

    Questions to ask your doctor

    After your child is diagnosed with EHE, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.

    Lots of parents find it helpful to jot down questions as they arise. That way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

    Here are some questions to get you started:

    • Could my child’s symptoms be caused by something else?
    • What treatment do you recommend we start with?
    • How will we know whether it’s working?
    • What would we do next?
    • How much experience has my child’s doctor had with diagnosing and treating EHE?
    Kid-centered care

    If your child needs treatment for EHE, there are many advantages to receiving care at a dedicated pediatric facility, such as Children's. Treatment to help shrink tumors—like chemotherapy and radiation therapy—can sometimes be intimidating for young children, so we plan, discuss and provide treatments around concepts that work for kids, their siblings and their parents.

  • Tests

    Diagnosing epithelioid hemangioendothelioma (EHE) can be difficult for many physicians simply because it’s such a rare condition. The specialists in the Vascular Anomalies Center at Children’s Hospital Boston are experienced with EHE. We have diagnosed dozens of children and young adults and made decisions about treatment options.

    How do doctors diagnose EHE?

    Diagnosing EHE is a process that happens in a few stages because the skin lesions associated with EHE are often confused with more common skin conditions.

    • Your doctor will evaluate any internal lesions are evaluated based on the symptoms caused by the locations of EHE tumor(s).
    • Your doctor may recommend an imaging study based on physical signs or results from blood tests.
      • An experienced radiologist may consider EHE based on imaging.
    • Tumors seen on imaging are often biopsied and a pathologist may be the first person to consider the diagnosis of EHE.
      • Biopsy is nearly always needed to confirm the diagnosis of EHE.

    That sounds complicated. Where do we start?

    When you make an appointment at Children’s, we start by gathering all the information from doctors and studies already performed. When you get here, we will ask you about your child’s and family’s medical history and your child will receive a thorough physical exam.

    Your child will probably need a biopsy performed to be certain of the diagnosis of EHE. A biopsy is a simple surgical procedure where a doctor removes a small tissue sample from the tumor in the least invasive way possible. Your child may be sedated or more likely asleep (under anesthesia) for this procedure.

    • Examining the tumor's cellular appearance and other features under a microscope allows the physician to determine definitively whether your child has EHE.
    • If your child has had a biopsy done elsewhere, we always try to make the diagnosis with this sample before performing another biopsy.

    What imaging studies might our doctor recommend?

    We will review imaging studies performed elsewhere and determine if additional imaging needs to be done specifically here at Children’s. Depending on where the tumor is located, this may include an MRI scan, a CT scan, an x-ray or a PET scan.

    • magnetic resonance imaging (MRI): This high-resolution scan shows the size of your child’s tumor and its relationship to nearby muscles, nerves, bones and other blood vessels. MRI provides the best available pictures and does so without radiation exposure. However, doctors can’t use MRI everywhere on the body and some areas affected by EHE may be better imaged with other technologies.
      • We have multiple MRI scanners at Children’s and experienced radiologists available to interpret the images.
    • computerized tomography scan (also called a CT or CAT scan): A CT scan also shows detailed images of the area around your child’s tumor, including the bones, muscles, fat and organs.
      • It is better than MRI for looking at lesions on your child’s bones.
      • CT scans use radiation to see inside your child’s body, though the risk of radiation is minimized with imaging protocols developed here at Children’s.
    • x-ray (also called a plain film): Traditional X-rays are also helpful for lesions on your child’s bones. They also use less radiation than CT scans.
    • PET scan: A PET scan is a whole body scan (except for the brain). A small amount of radioactive glucose (sugar) allows our nuclear medicine radiologists to see active tumors throughout the body.
      • EHE tumors take up more sugar than surrounding tissues and can be monitored with PET scans.

    PET scan can be helpful at diagnosis to see where else tumors may be and helpful to monitor response to therapy.

    • Children's is the only facility in New England that has a PET scanner dedicated solely to children.

    Are there any other tests?

    Your child's doctor may also ask for bloodwork to measure liver and kidney function, blood electrolytes and blood cells. This is important for diagnosis and sometimes during therapy.

    What’s the blood test like?

    One of the members of your care team (probably a nurse) will take a little blood from your child and collect it in a small glass tube. Our lab then analyzes your child’s blood and sends the results to your doctor who will follow up with you about treatment options and what happens next.

    CarePages

    Keep family and friends up to date during your child’s treatment by creating a free Children's CarePage.

  • Undoubtedly, you were distressed when you learned that your child may have epithelioid hemangioendothelioma. This likely led to an Internet search yielding conflicting and confusing information. We understand how troubling a new diagnosis can be for a family.

    But at Boston Children's Hospital, we view the diagnosis as a starting point: Now we're able to begin the process of treating your child—stabilizing, shrinking or removing the tumor—so that we may ultimately return your child to good health.

    What are the treatment options for my child?

    EHE is a complex condition. Your care team will outline the benefits of all the treatment options listed below with you.

    Observation: If there are no obvious complications, your child's doctor may want to simply observe the tumor for a period of time.

    • Observation allows your child's care team to determine how the tumor is behaving.
      • For example, some tumors go away without treatment, so if we observe the tumor for a few months and see that it's shrinking, we probably won't recommend any treatment. This is an important option to avoid unnecessary treatment.
      • However, if we observe it growing, we can immediately step in with aggressive treatment to stabilize, shrink or remove the tumor.

    Surgery:  If your child's tumor is small and/or in an easily accessible spot, your doctor will probably recommend surgery to remove it.

    • This is our preferred treatment if we're fairly certain if we can remove the entire tumor, since there's little chance of it growing back.

    Medications:  If your doctor thinks it's impossible to remove the whole tumor surgically—or if there are multiple tumors in several locations—we'll probably recommend one of several medications that slow the growth of the tumor by interfering with abnormal cell growth.

    • Some of these medications are targeted to blood vessel formation (anti-angiogenic) and others target cell division and growth (chemotherapy). Medications may be used in combination and sometimes the first regimen isn't successful and others may be recommended. Unfortunately, there is no current drug that specifically targets the abnormal EHE cells.
    • These medications need to be given and monitored by an experienced hematology/oncology team. Here in Boston, we administer most of these medications at Children's, while outpatient chemotherapy is given in partnership with Dana-Farber Cancer Institute across the street.

    Some examples of commonly recommended medications are listed here. The goal of medical therapy is to relieve symptoms and prevent further growth of the tumor. Some tumors shrink and even become invisible with therapy.

    Vincristine

    Vincristine is a chemotherapy drug that targets all dividing cells. It is used for aggressive benign vascular tumors like Kaposiform hemangioendothelioma and as a component of cancer therapy for many tumors.

    We give children Vincristine to your child through an IV central line.

    • A surgeon will implant a small port (you won't see it, but you will be able to feel a bump) in your child's chest, which allows the medicine to go directly into a vein.
    • It's a minor surgery in which the surgeon makes a small incision and then inserts the port, linking it to a large vein in your child's chest.
    • Once the course of treatment is completed, a surgeon will remove the port.

    While the word “chemotherapy” can be scary, rest assured that the treatment for EHE has few of the side effects of traditional chemotherapy.

    • Most children do very well on Vincristine, and your child shouldn't have any nausea, hair loss or weakened immune system with the treatment.
      • Your care team will explain the few, minor side effects your child may experience.
      • Being able to anticipate these side effects can help you prepare for, and, in some cases, prevent these symptoms from occurring.

    Interferon

    Alternatively, your doctor may recommend injections of interferon.

    • Interferon is a drug that is used for a number of disorders to limit new blood vessel formation and reduce blood supply to the tumor.

    The regimen and length of therapy is variable and is customized for your child by your doctor and care team. Injections can be given under the skin daily, three times a week or weekly.

    Rapamycin

    Rapamycin is a drug like Interferon that appears to target blood vessel growth, but is given orally instead of by injection.

    Tyrosine kinase inhibitors

    These drugs were designed as targeted therapies for cancers, but have been used for many tumors. Some hospitals have used these drugs for short periods for EHE with short-term success and these drugs may be considered for your child.

    Other treatments

    In very aggressive cases (or situations where your child's tumor doesn't respond to any of these therapies), your doctor has other options:

    • clinical trials: As the home of the largest vascular anomalies center in the world, we often have access to new drugs being evaluated through clinical trials. Search current and upcoming clinical trials at Children's.
    • embolization: This is a process in which a doctor inserts a block into the main artery that's feeding your child's tumor. With the blood supply cut off, the tumor will often shrink. However, EHE is most often fed by a number of arteries instead of one main artery; and if that's the case, embolization is much less likely to be successful.
    • radiation: If we can't remove your child's tumor surgically and it doesn't respond to chemotherapy or other medications, we may consider using radiation therapy in rare cases.

    Supportive care

    We want to maximize the safety and effectiveness of whatever therapy you and your child's doctor decide upon. Supportive care involves preventing and treating infections and side effects of treatment to keep your child as comfortable as possible while we're working to stabilize, shrink or remove the tumor.

    Continual follow-up care

    A schedule of follow-up care will be determined by your child's physician and other members of your care team to see how your child is responding to the therapy.

    • Your child should have regular follow-up during and after treatment to check for growth or spreading of the tumor.
    • If medical therapy is given, follow-up also includes evaluation for any late effects from these medications.

    Rehabilitation

    Depending on your child's symptoms and the progression of the disease, we may bring in the following specialists.

    • physical therapists: Sometimes the tumor can affect surrounding tissue and muscles, making it hard or painful for your child to move an arm or a leg. A physical therapist can help ease the pain and increase your child's range of movement.
    • occupational therapists: Children with EHE sometimes get behind on developing motor skills because of physical problems related to their tumors. An occupational therapist can get your child back on track.
    • counselors: Sometimes EHE shows up a lesion on your child's skin. As your child gets older, he or she may be uncomfortable with that skin lesion, especially if it's in a prominent location such as on the face or neck. One of our counselors can help your child deal with the psychological and social issues related to having a birthmark.

    Coping and support

    We understand that you may have a lot of questions when your child is diagnosed with EHE, like: How will it affect my child long term? What do we do next? We've tried to provide some answers to those questions in the following pages, but there are also a number of other resources to help you and your family through this difficult time.

    Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have, such as: What is treatment like? Are there any side effects? They will also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent: Want to talk with someone whose child has been treated for EHE or a similar condition? We can often put you in touch with other families who can share their experience.

    Faith-based support: If you and your family find yourself in need of spiritual support, we can connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your treatment experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    Our Vascular Anomalies Center offers links to organizations that offer support and education for parents who have a child with a vascular anomaly.

    Integrative therapies

    Our patient-centered approach means that we want your child to not only get better, but also feel good along the way. Throughout the hospital, you¹ll find clinicians trained in therapies that can make your child feel more comfortable, learn to shift focus away from pain and enjoy some peaceful moments during what may be an anxious time. Read more about how acupuncture, guided meditation, guided imagery, massage, Reiki and therapeutic touch could help your child.

    Child Life specialists

    "Don't forget to tell them the rules," 7-year-old Lia DiFronzo says to Amber Soulvie, her Child Life specialist. Read more about how our Child Life specialists helped Lia.

  • Research & Innovation

    Children’s Hospital Boston is home to the world’s largest  Vascular Anomalies Center (VAC). When doctors anywhere in the world have questions about a child’s birthmark and how to treat it, they often call us.

    • We have seen kids with epithelioid hemangioendothelioma (EHE), so our doctors have experience with this rare condition—which means that your child will get multiple specialists confirming the diagnosis and crafting the best treatment plan for your child.

    The VAC is a team of 25 physicians—representing 16 medical and surgical specialties—who are experts in the field of vascular anomalies.

    • Our team collaborates in the evaluation and management of kids with EHE and other rare vascular conditions.
      • This team approach ensures that your child’s treatment plan — if treatment is necessary — is carefully developed and coordinated with the expertise of our specialists in vascular anomalies and in other medical areas throughout the hospital.
    • We’re also the worldwide referral center for kids who have these kinds of vascular conditions.
      • Our team of physicians meets each week to review medical histories, photographs and radiographic images and pathology slides of kids who may have conditions like EHE.
      • The large volume of kids seen and reviewed each year contributes to our team's expertise and familiarity with the latest treatment options for children with these kinds of conditions.

    Anti-angiogenic therapy shrinks tumors

    As we explain in the Treatment & Care section, interferon and rapamycin therapy use an angiogenic inhibitor to slow the growth of new blood vessels and cut off blood supply to your child’s tumor.

    The whole idea that tumors are unable to grow beyond a certain size without a dedicated supply of blood was conceived by Spondylolysis, former director of the Vascular Biology Program at Children’s.

    • These days, angiogenesis inhibitors and stimulators are powerful new weapons in the battle against tumors like EHE as well as a host of other illnesses.

    Angiogenesis inhibitor therapy works on Folkman's principle that, rather than waging a toxic chemical and radiation battle with a tumor, doctors could starve it into submission by shutting down its blood supply.

    • Today, at least 50 angiogenesis inhibitors are in clinical trials around the world, and more than 1,000 laboratories in universities and industry are conducting angiogenesis research.

    Read more about Folkman’s pioneering research and its application to your child’s treatment for EHE.

    New treatments, better outcomes

    Sometimes it’s tough to determine the best treatment for EHE because it has such a wide spectrum of behavior. In some kids, the tumor goes away without treatment. In others, it grows, appears in other parts of the body—and it can even be fatal.

    Understanding which types of therapy work for which kids will help us treat more children more effectively. With that in mind, researchers and physicians at Children’s are reviewing hundreds of cases of kids with EHE and compiling that information into a comprehensive database. We are doing this by reviewing every EHE case referred here, partnering with other vascular anomalies centers and contacting families and their doctors to learn about best therapies and outcomes for patients with EHE.

    Additionally, we are always developing clinical trials for patients with rare vascular anomalies, including EHE. Please ask us about our current clinical research on EHE.

    Children speak: What's it like to be a medical research subject?
    Watch this video on a day in the life of Children's Clinical and Translational Study Unit.
  • Vascular Anomalies Center

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    Fegan Building, 3rd Floor
    Boston MA 02115

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