We have a number of information sheets and printed resources for families, in addition to content on our Vascular Anomalies Center webpage. We also connect families to patient advocacy groups, who serve as an important resource for families dealing with a rare disease. We have a family resource center with computer access and plenty of books related the care of children with complex illnesses. Our social worker is available to all families visiting our center and can help with other resource issues when they arise.

Cameron Trenor, MD

 

Most parents are pretty active about searching the web on their own, and I don’t really try hard to steer them other than I think it’s important to be looking at resources that are reputable. For given conditions, it’s very important to be consulting at a place that sees a lot of such conditions, so academic centers with very high volumes in a particular area, the NIH and the various agencies of the NIH, the CDC; those are all, I think, reputable types of resources.
There are lots of resources out there also in terms of interest groups and parent groups where parents connect with other families. That can be great, and parents get a lot out of that, I think, hearing others’ experiences, and then they can get concrete advice about where to go for treatment or what to expect and things like that.

There’s also a lot of apocrypha out there that can be dangerous and misleading, especially because the diagnosis is not always clear before they have a proper workup. The range is so wide that if you’re out there, you sort of know what it is but not really, and then you start reading on the web about all this stuff that may be completely irrelevant to what your child has. That’s potentially bad for you and the child.

Darren Orbach, MD, PhD

 

There are very few books out there. Most of the medical literature, and unfortunately most of what you find on the web, is wrong or people are looking for the wrong term. If they have a venous malformation, but their doctor told them they had a hemangioma, they will research hemangioma online and they’re reading about a condition that they don’t have. Or if they do have a venous malformation, and somebody tells them that correctly and they go search for information about it, they don’t actually find much because everything is listed under hemangioma, so the publicly available information is really bad. There are some reliable sources—we like to think our website is one of them… There are a few support groups that have been organized by families which are quite mature and reasonable and have websites that have information on them and links to some of the hospital websites. Some of those support groups are well-informed, some are less well-informed. Some of them are objective and some of them are fronts for various physicians who are trying to attract business, which is a problem. That’s why we feel an obligation to continually improve our website.

Steven Fishman, MD

 

On our website, there’s a resource page that talks about social/emotional coping, that’s a very general place to start. Because the diagnoses of vascular anomalies are so different, there are many different support groups. Some groups are very specific and some are a little more general, and so I would encourage people to start there first and see if there’s anything that meets their needs. Most of the groups that we know about are on that website… It’s hard for our Vascular Anomalies Center to have a support group because our patients are so varied and from all over the place.

Brooke Corder, MSW, LCSW