I have been in the same situation with my daughter. My daughter is now 12 years old and was born with pws that covered her entire left leg. We live in a rual area and did not know what to do. Her pediatrician had never seen anything like it before. We found the Hemangioma and Vascular Maformation Center at Cincinnati Children's Hospital and she has been in treatment for about 10 years.
My 9 month old has a PWS on her cheek and neck. She's recieved 2 treatments so far, on more scheduled in May. I felt the same way, overwhelmed and kinda freaked out. Find a doctor you can trust, and don't stop asking questions. Hope all is going well.
Dear Worried Father,
My son 13 year old son has a PWS on his left cheek and has had laser treatments since he was 11 months old. I have a lot of experience to share with you if you'd like to communicate offline. While the internet can be a great resource it can also be overwhelming and scary. I'm glad you've found this website though, you'll get straight forward information and people to guide you in the right direction. My email is firstname.lastname@example.org
Good luck and hope to hear from you.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
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