Here are some great links to find out more information about this special type of birthmark.
BASIC INFORMATION
What exactly is it?
Vascular Malformations and associated syndromes
The Vascular Birthmark Foundation
Our Amazing Doctor and Hospital
Dr. Jeffry Orringer
University of Michigan Dermatology
NEWS
Single, random change to gene during fetal development causes birthmarks and the more serious Sturge-Weber syndrome
Research
Sturge-Weber Research Study
Inspirational Posts
After 14 years of covering it up, woman decides to stop hiding her facial birthmark
2 comments:
You are an amazing mom and your son is beautiful. I just wanted to thank you for doing this, and say I hope you keep it up!
Our infant son has PWS and we're not sure what we're dealing with yet in terms of the risk for SWS, but reading through your journey has helped me understand where we might be headed with PWS. It's still a challenge to accept. The swelling and bruising and so on are hard to handle on their own, and I am even more nervous about the long-term effects of routine exposure to anesthesia.
Thank you so much for your kind words. I haven't posted much lately but there aren't really any new updates. Elliot had his last treatment early this year and we haven't scheduled one yet. Due to a change in insurance I'm not sure when his next will be. :( We haven't had Blue Cross before but I've heard it's a battle to get them to cover.
Try to relax and not over think the SWS. That was such a concern of mine that it made me miserable when he was young. He's now a bright, happy and well adjusted 7 year old. I know the road looks long, hard and scary but you are not alone. If you are on FB I suggest joining the Birthmark Buddies group where you can interact with all of us. <3 Best wishes for you and your little one.
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