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About
the malformations
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Venous
Malformations: |
A
vascular malformation in which the veins are abnormally
large. |
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Port-wine
Stains: |
Port-wine
Stains (PWS) are abnormal small blood vessels in the skin.
They are present at birth and persist throughout life
without regression. Some PWS are seen in combination with
other vascular anomilies. |
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Hemangiomas: |
A
benign tumor of dilated blood vessels. It is the most
common tumor of infancy. Hemangiomas can be superficial
(strawberry), deep or a combination of both. About 30%
of these lesions occur on the face. |
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Klippel-Trenaunay
Syndrome: |
Varied
in its presentation but is classically described as an
enlarged extremity on one side of the body with an overlying
port-wine stain. Classically there is an underlying vascular
tumor comprised of veins or lymphatic vessels. Excessive
bone growth in the involved limbs may occur as well. |
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Other
helpful websites
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www.birthmarks.com |
A
great resource site as well as info about support groups
relating to birthmarks, port wine stains and laser therapy. |
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www.joiedavidow.com |
Renowned
author, editor,writer and consultant Joie Davidow recalls
her personal experiences growing up with a port wine stain
that covers a large portion of her face. |
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www.drajburns.com |
Dr.
A. Jay Burns |
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www.childrens.com |
Children's
Medical Center of Dallas |
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www.lascolinaspolo.com |
Las
Colinas Polo Club |
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www.journeytowardhealing.com |
By
RN Jennifer Smith and Child Life Specialist Bradie Kvinsland.
This book is a combination of being a parent's nurturing
coach, personal diary, and medical record book. |
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www.aboutfaceusa.org |
A
nonprofit support network for facial difference. Their
resources include newsletters, videos, and publications. |
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www.craniofacialcenter.com |
Their
extensive web site is a graphical consumer's guide to
many craniofacial surgical procedures. A gem of a resource. |
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www.faces-cranio.org |
FACES
- The National Craniofacial Association. Travel funding;
Educational booklets |
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www.facesofchildren.org |
New
England parent support network for awareness and education.
This site is for parents who are just learning that their
child has a craniofacial condition. Award-winning FREE
video for new parents of a child with a cleft (Understanding
Cleft Lip & Palate, A Guide for New Parents (video),
page 14). English and Spanish versions available. |
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www.rarediseases.org |
National
Organization for Rare Disorders (NORD) will do individual
research for you. They publish an amazing, comprehensive,
1152-page paperback book that lists more than 1200 patient
organizations and support groups. Be sure your medical
or public library has updated copies! |
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www.stompproject.org |
Specialized
Training of Military Parents (STOMP) provides international
medical information and training to military families
who have children with special needs. Workshops, phone
consultation, and presentations. |
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www.sturge-weber.com |
An
informative resource. |
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www.members.tripod.com |
Hemangioma
Hope - a prayer network. |
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www.enter.net./~happymail/index.html |
A
children's story about hemangioma birthmarks. By Dana
Roberson Guerra, illustrated by Molly Troxell. |
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www.vcfsef.org |
Velo-Cardio-Facial
Syndrome Educational Foundation |
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www.familyvoices.org |
Family
Voices - A National Coalition Speaking for Children with
Special Health Care Needs. State representatives, National
Voice for Health Insurance, etc. A wealth of information. |
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www.insurekidsnow.gov |
Healthy
Kids Now Children's Health Insurance Program - Sponsored
by the White House, National Governors Association, etc.
Learn how to get health insurance for children. Their
web page offers state-specific information on who is eligible
and how to enroll. |
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www.asds-net.org/find.html |
American
Society for Dermatologic Surgery |
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www.ccakids.com |
Children's
Craniofacial Association. A non-profit organization providing
travel, food and lodging for families that are affected
with craniofacial disfigurement. |
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www.hnline.org |
Hemangioma
Newsline. Aiding Families in the Diagnosis and Treatment
of Hemangioma and Vascular Malformations. |
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messageboards.ivillage.com/iv-ppbirthmarks/messages? |
iVillage
Parent's Place, Birthmarks and Hemangiomas Board. Message
board for parents of children with hemangiomas and vascular
birthmarks. |
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swf@sturge-weber.com |
Kid's
Only Email Support Group. The SWS Foundation has just
started a kids only e-mail support group
for kids with SW/PWS. |
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www.k-t.org |
Klippel-Trenaunay
Syndrome Support Group. Web site for the K-T Support Group. |
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www.ktfoundation.com |
The
KT Foundation is a group of volunteer advocates for those
afflicted with Klippel Trenaunay Syndrome (KTS.) |
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www.faceit.org |
Let's
Face It. A nonprofit network that links people with facial
disfigurement and all who care for them with resources
that can enrich their lives. |
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www.nevusnetwork.org |
Nevus
Network. A support group for those with a large brown
birthmark called a congenital nevus. |
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www.birthmarksupportgroup.org.uk |
The
Birthmark Support Group. UK Based support group for anyone
with a birthmark. They have an excellent website and many
resources. |
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www.aad.org |
American
Academy of Dermatology - a membership of more than 14,000
physicians worldwide. |
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www.birthdefects.org |
Birth
Defect Research for Children |
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www.staycalm.org |
Children
Anguished with Lymphatic Malformations |
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www.cmn.org |
Chldren's
Miracle Network |
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www.forwardface.org |
Forward
Face |
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www.kidshealth.org/parent/misc/about.html |
Kids
Health |
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www.miracleflights.org |
Miracle
Flights |
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www.nih.gov |
National
Institutes of Health |
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novanews.org |
National
Organization of Vascular Anomalies |
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www.nevus.org |
Nevus
Outreach |
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www.operationsmile.org |
Operation
Smile |
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