We are so grateful to Lola’s mom, Emma, for sharing their journey with us.
Lola was born with a large visible kaposiform hemangioendothelioma with kasbach merit. She was misdiagnosed twice, then had propranolol steroids and vincristine.
At the moment, Lola is not on any treatment and the kms part is resolved. We have a Facebook page about Lola’s journey, where a lot of parents contact us to ask for help & advice. We share the wonderful work that VBF does, too.
Raising awareness and giving support to others is important. as we hardly knew anyone at the hard time of treatment to help & support. Now we have a wonderful khe family.
This list in no way is to be construed as containing the ONLY physicians who treat vascular birthmarks. There are many other physicians who are qualified and have great expertise in this area. This list contains some physicians who have become a part of our resource list. We briefly mention what some of these physicians treat if we have that information under their name and address. If you are a physician or if you know of a physician who should be added to our resource list, please use our Physician Enrollment Form.