Vascular Anomaly Treatment Centers

When looking for a physician to manage and treat, hemangioma, vascular malformation, PWS, KT, PHACES, and other vascular anomalies, there are several key things to consider. Whether you choose a large medical center, university based center or a private practice physician the center should offer a comprehensive multidisciplinary approach to treatment. The center should have a physician staff with experience, dedication and interest in the diagnosis and current treatment modalities available. There should be coordination with a variety of support services and scientific research labs. Establish financial aspects of the treatment including insurance and payment plans. Patients need to determine the philosophy in the treatment of vascular anomalies used at the clinic and evaluate if the specific center is the best match for their specific diagnosis.

Ideally a Vascular Anomaly Treatment Center would offer a comprehensive and multidisciplinary group from the following medical disciplines.

* Dermatology * Plastic surgery * ENT (otolaryngology) * Surgery * Hematology/Oncology * Dental/Periodontal * Pediatrics * Psychology/Social Services * Radiology ** Neurology/neurosurgery ** Ophthalmology ** Orthopedics

** denotes a medical discipline that is available for specific cases requiring the area of expertise

While large medical centers and university based hospital centers would have direct access to all of these disciplines there are many smaller clinics and private practice physicians that offer excellent medical care that refers patients and consults with the larger centers for complex issues.

More important then the size of the clinic; is the program should have a dedication, interest and physicians experienced in the diagnosis and treatment of vascular anomalies and the syndromes associated with these lesions. The center should be apprised of current terminology and new approaches to the management of vascular anomalies. Physicians should be board certified and have completed a Fellowship following their residency that included training in the management of vascular anomalies. Not all residency programs include training in hemanigoma and vascular malformation. In addition physicians can receive continuing education in vascular anomalies through programs offered by the International Society for Vascular Anomaly Physicians. (IVSAP)

In addition to the physicians the VAC should offer access to a variety of support services for patients and families. These services include patient advocacy, social services, patient education materials and non-profit organizations. Many VAC are coordinated by a Nurse manager assigned to the program. The nurse manager is a vital part of the clinic. The nurse manager assists the patient and family with education about diagnosis and treatment, answers questions about procedures and post-operative care and serves as a liaison between the center and the other support services.

There are several philosophies to the treatment of vascular anomalies. Some centers are conservative and prefer a careful observation of diagnosed infants with vascular anomalies and others offer early and aggressive management with a variety of treatment modalities. Today treatments available for vascular anomalies and the related syndromes include medical management, laser treatment, surgery, scelerotherapy and physical therapy procedures. A VAC should include physicians experienced in these treatment options and specifically how they are used to manage vascular anomalies. Since hemangioma and vascular malformations vary from patient to patient the treatment philosophy employed by the center should offer individualized treatment plans based on the size, location, complexities and potential for complications for the patient.

Many centers are affiliated with or collaborated on scientific research in order to understand the biology of vascular anomalies and to modify and improve treatments currently used. The National Institute of Health and other private groups offer grant funding for research. Some clinics collaborate with the university based research labs providing lab specimens and data for the research. Collaborative research allows the physicians in private practice, small clinics or in the large centers to all be involved in the large grant funded research projects. There are many excellent clinics that are not directly involved with research, it is important that these facilities are apprised of the new approaches and methods used in the treatment of vascular anomalies that come from the research. These studies are published in the peer review medical journals.

Once a VAC is identified, the experience and specialty of the physician is considered by the patient or family for managing their individual hemangioma or vascular malformation and the availability of support services are incorporated into the treatment plan the patient and family should consider several questions before making their final decision.

• Does the Center offer a variety of treatment modalities?
• Does the Center provide post surgical support and direction?
• What is the complete treatment plan and expected time line for treatment?
• What type of surgical or laser techniques will be used to manage this patient?
• Will prosthetics be used and are they directly available from the center?
• Can the patient be monitored by the local primary care doctor for lab work, blood pressure and other routine testing in between visits to the VAC?
• Are there other parents/patients of the VAC available to talk to prior to treatment?
• What form of payment does the VAC accept?
• Which Insurance Companies do they participate with?
• Does the VAC offer a payment plan for cash patients?
• Will the VAC assist with insurance appeals?

Choosing a physician or team of physicians to manage and treat a vascular anomaly is important for the overall success and satisfaction of the patient. Considering the medical disciplines needed and provided for care, treatment methods used, support services offered, philosophies employed in treatment and overall individualized treatment offered will increase patient satisfaction.

NOVA PROVIDES THIS INFORMATION TO FAMILIES AS A RESOURCE. IT IS NOT INTENDED TO ENGAGE IN THE PRACTICE OF MEDICINE OR TO REPLACE THE PHYSICIAN. NOVA DOES NOT CLAIM TO HAVE MEDICAL KNOWLEDGE. NOVA DOES NOT ENDORSE ANY PARTICULAR PHYSICIAN, TREATING FACILITY OR TREATMENT PROTOCAL. IN ALL CASES NOVA AND ITS BOARD OF DIRECTORS RECOMMENDS THAT YOU SEEK THE OPINION OF A PHYSICIAN EXPERIENCED IN THE MANAGEMENT OF HEMANGIOMAS AND VASCULAR MALFORMATIONS. 

Revised 2-25-2010 klh

Introducing Anna

Welcome to Anna Rankin of Cincinnati.  Anna is a graduate student at the University of Cincinnati studding health communications.  She is specifically managing illness uncertainty through doctor/patient communications.  Anna was born with a venous malformation of right cheek, tongue, ear and neck.  She has been undergoing treatment since high school using laser, sclerotherapy and a debulking surgery.

 

Anna’s personal journey with VM sparked her interest in communication and health care, specifically how health communication can be used to help parents, children and families better manage the uncertainty that surrounds their disease.  She is currently doing research at the Cincinnati Children’s Hospital and the Hemangioma and Vascular Malformation Clinic with Dr. Denise Adams.  She is also representing NOVA to the clinic, sharing her experiences as a patient.  As a NOVA family advocate she will use her experience in health communication to improve communication for NOVA families and their doctors. 

 

Anna is a member of the NOVA facebook group and will be responding to posts there and on the NOVA blog.  If any of our families would like to communicate with Anna you can reach her through NOVA. 

Anna can be reached by email through NOVA at arankin@mail.novanews.org

 

Media Brief

 

NOVA Media Brief 2010

 

NOVA and the work we do.   In 2010 NOVA is asking each family we have helped to share their story with their local media.  By sharing your personal story with your local newspaper, radio station or television station you can reach tens of thousands of individuals with the message of NOVA.

 

Introduction:

“Since 1996, NOVA has been providing support to all individuals with hemangioma, vascular malformations and related medical conditions.  The dedication of  an all volunteer leadership team and medical & scientific professional advisors has been the foundation of  NOVA. 

 

NOVA has successfully influenced the medical community to revise an 85 year old attitude that vascular anomalies were simple birthmarks- better left untreated. By educating patients and their families to the classification, diagnosis and treatment of vascular anomalies individuals have been empowered to not accept the status quo and to work with their pediatricians and primary care doctors to find treatment centers to manage their medical care.

 

NOVA has joined with professional organizations like the International Society for the Study of Vascular Anomalies, the Coalition of Skin Disorders and the Genetic Alliance to raise awareness for these common yet misunderstood disorders.

 

NOVA has embraced every individual that has needed support, assistance and information in finding medical care that many had thought did not exist.”

 

 

 

 

National Organization of Vascular Anomalies

www.novanews.org

 

 

 

 

 

 

 

 

Personalization:

 

            1.  Share your story: example

 

We were one of those families that NOVA helped.  In 2004 our daughter was born with what we thought was a small red birthmark on her face.  We were told in the hospital that it would be gone by the time she was 5 and not to worry about it.  Within the first few weeks the birthmark had grown so large it was closing her eye and had several small wounds on it.  Despite the obvious pain our child was in and the bleeding that occurred from each wound on our daughter’s face our doctors told us not to worry and that it would get a bit worse but eventually go away.  After weeks of thinking our daughter had a simple birthmark they finally used a new word, “hemangioma”.  I did not know what a hemangioma was but as soon as I got home I sat at my computer and looked it up.  As the images of other children with hemangioma scrolled across the screen I was shocked.  My child did not have a mere birthmark that would go away at age 5, rather she had a tumor!  A tumor that would grow for at least a year and one that was associated with several complications.  On the website that provided me with all this information was an email address, I wrote to the email address and much to my surprise I received an answer the next morning. 

 

The website was for NOVA- the national organization of vascular anomalies, www.novanews.org.  The email that replied to my request for help offered a private telephone number to call.  Later that morning I was speaking with NOVA’s Karla Hall.  Karla and NOVA provided me with information on hemangioma  and an associated syndrome known as PHACE.  I was given assistance in finding a doctor that could help treat my daughter.  Within one week I was at Cincinnati Children’s Hospital with my child.  We had testing and started treatment right away.  Within a few days my daughter’s eye was opening, the wounds were healing and we were on our way to making sure our child was cared for.  My daughter does have PHACE and will need care for years as a result of it.  I can not even imagine what would have happened if I had not found NOVA.

 

Not only did NOVA provide me with information on doctors but they were able to connect me with other families through social networking sites like facebook, message boards and blog sites.  The families that connect on these sites share information that helps us simply get through the day.

 

 

 

National Organization of Vascular Anomalies

www.novanews.org

 

 

 

 

 

 

 

 

Last year NOVA hosted a conference in Houston Texas for PHACE families and we were able to attend. We were able to meet many of the families that we had been networking with.  We were able to speak with the leading doctors in the field.  We were able to enroll our children in some research that will eventually lead to better diagnosis and treatment for PHACE kids.

 

            2.  Include Photos of the child- a picture says a thousand words.  This is a visible disease let the photos speak for you.

 

 

Conclusion:  Bring it back to NOVA & tie it to your community.

 

Each year approximately 40,000 children will be diagnosed with a significant vascular anomaly.  Yet according to research from clinics treating vascular anomalies about 50% will be misdiagnosed and 35% of these children will receive improper treatment.  My child was one of the 35% that received improper or no treatment.  It could have led to life threatening complications. 

 

At the “list the name of your local hospital”,  _________ children are born each year.  Many of these children will be born with a vascular anomly like my child.  Early and accurate diagnosis and treatment is so important.  Please share my story with your readers and how NOVA can help families  find the medical care and support they need.

 

Provide Contact information for you.

 

 

Provide Contact information for NOVA

National Organization of Vascular Anomalies

www.novanews.org

PO Box 38216

Greensboro, NC  27438-8216

Karla Hall, Executive Director, khall@mail.novanews.org

John DuBiel, President, jdubiel@aol.com

Denise Adams, MD, Medical Director.

 

NOVA is a 501c3a organization.

 

 

National Organization of Vascular Anomalies

www.novanews.org

Supporting NOVA

Dear Friends of NOVA:

2010 has brought some challenges to NOVA and most other charities.  The economy in the US and around the world has led to a decline in donations across the board.  At NOVA we have “tightened” our belts and have made our organizaiton work more cost effectively then ever.  Many of you already know that NOVA works on on a streamlined budget.  Most of our services are offered by the support of volunteers.  Our physicians, scientists, support staff and board of directors are all volunteers.  We continue to provide information and assistance to everyone one that contacts us.  Most months we are contacted by 100 different individuals!

Eventhough NOVA is an all volunteer organization we still have expenses.  We have been so forutnate that we have never not had enough to cover our needs. 

This year we want to host another conference for families.  In order to make this happen we are begining an active fundrasing season.  We are asking every family that we have assisted over the years to help us in this effort. 

If every family we assisted in 2009 send us a $10 donation we would rasie $12,000 in March! 

In the fall of 2009 one NOVA family hosted a raffle.  $6000. was donated to NOVA from this single event. Other families sent out a letter to friends and family asking for support of the organization that helped their child.  Each of these families raised over $1000 with their letter campaign.

Currently there is a February event being hosted by Wee Rock Coulture-

http://www.weerockcouture.com/

NOVA needs your help this year! 

Send your tax deductible donation to NOVA: PO box 38216 Greensboro NC  27438-8216.  Donations can be designated as Memorial or Honorary Donations for a specific individual.

Help NOVA host the next Family Conference!

NOVA Board of Directors

Karla, John, Lillian, Bob, Kaye, Roy & Denise

Facebook Update

NOVA is moving our link on facebook from a fan page to a group page.  The new link will be-  http://www.facebook.com/group.php?gid=306674032112&ref=mf   you will need to rejoin at this new site.  We will keep the old site up for a while but please transfer as soon as you can.

Karla