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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.miraclefights.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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www.reneerosen.com |
Website
of author Renee Rosen, who wrote the critically acclaimed semi-autobiographical
novel "Every Crooked Pot", about a young girl who
was born with a hemangioma over her eye.
Renée
Rosen knows this heartache personally as she was born with
a hemangioma. While her condition was never as severe as Nina’s
(the young girl in the book), Rosen did undergo experimental
sclerosing agent injections and was treated with Argon and
C02 lasers back in the 1970s. When asked what prompted her
to write this novel, Rosen said, “This was the book I
needed to read when I was growing up. I needed to see that
I was not alone, that underneath it all, I was still lovable
and that I would find a way to be happy, birthmark and all.”
Renee
very generously donated several copies of her brand new novel
to Share A Smile for use in our exciting raffle off at the
2007 polo match fundraiser!
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