Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary GalaFriday, October 10, 2014 in New York City

VBF 2014 Annual ConferenceSaturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products
 

Ask the VBF Experts

Dr. Stuart Nelson, VBF Co-Medical Director and International Port Wine Stain Laser Specialist
Dr. Nelson will answer your questions concerning the diagnosis and treatment of Port Wine Stains.

 

Dr. Gregory Levitin, Hemangioma and Malformations Surgeon, NYC and LA
Dr. Levitin will answer your questions regarding the surgical treatment of all vascular birthmarks and tumors.

 

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Our expert for all non-brain AVMs and vascular lesions of the arms and legs, Dr. Rosen welcomes your questions.

 

Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.

 

Dr. Aaron Fay, Hemangioma and Malformation Eye Surgeon
Dr. Fay will answer your questions about orbital birthmarks.

 

Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.

 

Dr. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.

 

Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!

 

Dr. Anne Comi, Sturge Weber Syndrome Specialist
One of the leading experts on Sturge Weber Syndrome, Dr. Comi will be responding to your questions concerning this syndrome.

 

Dr. Alex Berenstein, Malformations and AVM Interventional Radiologist
Ask Dr. Berenstein your questions regarding interventional radiology.

 

Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian.

 

Dr. Barry Zide, NYC Hemangioma and Malformations Surgeon
If you have a question or concern about hemangioma and vascular malformation treatment in general, contact Dr. Zide.

 

Basia Joyce, VBF Insurance Appeals Specialist
Please send your questions regarding your appeal or request for out-of-network treatment to Basia.

 

Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Ask Dr. Edmonds your questions related to Lymphatic Malformations.

 

Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.

 

Dr. Orhan Konez, Interventional Radiologist
Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.

 

Dr. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.

 

Dr. Steven Fishman, Internal Lesions Surgeon
Ask Dr. Fishman your questions about liver and other internal vascular lesions.

 

Dr. Calil, Lymphatic Malformation Surgeon
Dr. Calil will answer your questions about Lymphatic Malformations.

 

Elissa-Uretsky Rifkin, M.Ed. CMHC Midwest Developmental Specialist
A trained developmental specialist and is on the board of VBF. Send questions concerning hemangiomas and this topic to Elissa.

 

Dr. Stavros Tombris, European Surgeon
Fr. Tombris treats all forms of hemangomas, port wine stains and malformations.

 

Dr. Stevan Thompson, Military (Tricare) Surgeon
Dr. Stevan Thompson has joined us to answer questions concerning the treatment of vascular birthmarks in the military.

 

Dr. Helen Figge, Pharmacist
If you or your child has a vascular birthmark and you have a question regarding a prescription drug, please ask Doc Helen Figge.

 

Dr. Linda Rozell-Shannon, VBF President and Founder
Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.

 

Lex Van der Heijden, CMTC Foundation
If you or your child has CMTC, please contact Lex with your questions.

 

Leslie Graff, East Coast Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to Leslie.

 

Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.

 

Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.

 

Eileen O'Connor, Adult Living with PWS

 

Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from www.colortration.com will answer makeup related concerns.

 

Alicita, Spanish Expert
Ask our expert Alicita, your questions in Spanish.

 

Dr. Thomas Serena, Wound Care Expert

 

Sarina Patel, Young Adult Advocate

 




 

What Our Families Are Saying About Us

 

"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

 


Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

 




Psychosocial and Emotional Issues for Individuals with a Port Wine Stain


2005 Vascular Birthmarks Foundation Port Wine Stain Conference
http://www.birthmark.org/
By Leslie Graff, M.S., C.C.L.S., VBF Developmental Specialist

Accepting PWS – address parental responses, gain information, create a support network for child.
Awareness and Understanding – help the child to understand PWS and find ways to talk about it “It’s my birthmark”, “It’s a port wine stain”, “It’s a type of birthmark, I was born that way”.
Social interactions – Literature shows this is one of the most significant challenges or areas of stress for individuals with PWS – actively create opportunities for social contacts, prevent isolationism.
Identity – Help individuals to see their abilities and not allow PWS to have exaggerated impact on their life.

15 Coping Strategies (can be used positively or negatively)

Aggressive activities – rough and tough play, sports, things that allow for physical release
Behavioral avoidance – not going places/doing things that are stressful
Behavioral distraction – using action or activity to change your focus – start talking, walk away
Cognitive avoidance – not thinking about it, ignoring
Cognitive distraction – using mental tools, thinking about something else, favorite place, favorite song
Cognitive problem solving – planning ways to respond, preparing for situations
Cognitive restructuring – changing how you think
Emotional expression – therapeutic outlets, expressive activities, appropriate “venting”
Endurance – I got through that, acknowledging personal strengths and investment
Information seeking – learning about condition, treatments, stay involved in PWS community
Isolating activities – separate self – spend a few hours clearing my head and refocusing, yoga, massage
Self-controlling activities – “take a deep breath”, “count to 10 before responding” tools for diffusing initial emotional reaction
Social support – talking with others, play, relationships, mentors, social activities, group activities
Spiritual support – faith, meditation, understanding of life, sense of purpose, acceptance
Stressor modification – identify the cause of stress/ remove/change (Ryan-Wegner, 1992).
Regressive/negative coping – fighting, irrational fears, anxiety, depression, controlling behaviors, poor school performance, denial, regression, withdrawal, self injurious behavior. (Brenner, 1984; Zeitlin & Williamson, 1994).

Creating Healthy Environments which Enhance Self Concept and Social Networks

Sense of responsibility – chores, care for pets, give assignments, life plan with short/long term goals
Sense of individuality/avenues of self expression – artistic/expressive/therapeutic outlets. The fundamental nature of art is that beauty comes from uniqueness.
Sense of competence – support, encourage and praise them with school work, achievement, talents, learning new skills, accomplishments, jobs, take classes, sign up for things, reading
Sense of belonging/importance – family, groups, organizations, community activities, volunteerism, faith, jobs, social activism – take up a cause, create a support network, boys and girls clubs, story time
Create positive body image – appreciate body abilities – view body as more than appearance – sports, physical activities, yoga, massage, relaxation, have a birthmark doll, body tracings, portraits

Therapeutic Outlets
o Appropriate – Aggression/frustration outlets: dance, sports, running, swimming, “aggression cookies”, play dough
o Young children – tactile experiences-- sand box, water table, salt tray, rice tray
o Painting, sculpting, drawing, pottery, ceramics, print making, scrapbooking, knitting, cooking
o Music – writing, listening, performing
o Drama – take on different roles, forum for sharing experience, video diary
o Writing – diary, short stories, poetry, message boards, graffiti board
o Being outside in nature (themes of difference), working with animals

Ways to Deal with Staring
o Make eye contact/ smile, seem approachable
o Start a conversation
o Create an alternative focus by drawing attention to something else.
o Explain your condition, “It’s a type of birthmark, a port wine stain”
o Choose to focus on something else

Bullying
o Teach appropriate techniques to respond, practice with role playing
o Use eye contact, firm words “Stop”, “No”
o Humor, silence can throw off the bully
o Lack of reaction – don’t show reaction – bully loses interest
o Avoid victim mentality, assure it is not their fault.
o Try to minimize opportunities for bullying
o Approach teachers, others about implementing no teasing/bullying policy

Coping with Procedures/Treatments
o Explain procedure using soft, honest language so the child knows what to expect – outline with steps. Explain duration of time and sensory experiences – things they will see and feel.
o Plan coping (listen to music, relaxation, self reward, bring favorite object, security item, toys)
o Provide opportunities for medical play
o Children – avoid separations from caregivers and use positions of comfort
o Discussion after – what can you do to make it better, more manageable?

Media
o Exposure to theme of difference, overcoming prejudice, acceptance in movies, literature, drama, puppet shows
o Avoid media that is focused on single ideal of beauty, unrealistic degree of perfection
o Utilize online/community resources on bullying, living with visible differences, assertiveness, support groups, awareness.

Communication
o Don’t belittle, disregard, minimize emotions, instead acknowledge and find appropriate healthy expressions.
o Have family rituals/traditions- eat together, family outings, holidays, celebrate each other
o “Best part of today?”, “Hardest part of today?”- helps reflect and develop strategies for future experiences, also identifies positive experiences in daily living.

Brenner, A. (1984) Helping children cope with stress. Lexington, Massachusetts: Lexington Books

Ryan-Wegner, N.M. (1992) A taxonomy of children’s coping strategies: A step toward theory development. American Journal of Orthopsychiatry,62, (2) 256-263

Zeitlin, S., & Williamson, G. G., (1994). Coping in young children. Baltimore, MD. Paul H. Brookes Publishing.