My 15 month old daughter was diagnosed with an orbital hemangioma at 7 weeks via a MRI. We have a team of 11 specialists that treat her as in all our research throughout the last year we have found no doctors, with the exception of one orbital specialist, who has seen such a case. Are there any other fellow cases on the forum? She has been treated with propanolol since 8 weeks and we have had great success with the treatment but are still seeking fellow cases. Thank you!
There are a couple of parents here who struggled with orbital hemangioma, but it's been a while since they were active. If you write to Dr Fay via our Ask the Expert form, he might be able to direct you to some other families. http://birthmark.org/experts.php
His form should be open... you have to login with the username and password that you use here. If for some reason it isn't working right, send your question to firstname.lastname@example.org and I will forward it to him. You may attach a photo, if you think it might help... although I gathered it might not help in your case.
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
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