Do you put patients in contact with each other?
If families ask to speak with somebody else who has a similar experience, what I do is get their information and then ask them about what’s most important. For example, is the family looking for someone who has the same leg affected or the same area? Or does the family want somebody who’s the same age? Some kids or parents want to speak with children that are a little bit older, so they can learn about what that patients has already gone through… I then talk to the nurse practitioners to review cases and review the database and try to see if we can find a match, and usually we can come up with a match of some sort. Sometimes I call and learn that it isn’t a good time for the person we are trying to connect with, or they’re too busy. Therefore, there can be delays in making the match, but it is something that I think families appreciate, that patients appreciate, and something that we think is important to try to do.
Brooke Corder, MSW, LCSW
A small venous malformation that we’re going to treat a couple of times and it’s not disfiguring, it’s not going to be a lifelong treatment, most times the families are not too [interested], but if you have a particularly debilitating or exceptionally rare condition, and the parents have not seen anyone else with this condition, then I think it’s quite useful. For example, the blue rubber bleb nevus syndrome with the very large lesions, those kinds of things are exceptionally rare and they have difficulty knowing how to deal with these things. They appreciate talking to somebody who’s gone through it already, and asking questions like “what are the effects of sclerotherapy?” and “what is the potential for having it resected, and what are the dangers and benefits?”
Gulraiz Chaudry, MB, ChB, MRCP, FRCR
We suggest it pretty liberally. Certainly if a family asks for it, we offer to try to find somebody of a comparable age, maybe in the same part of the country or the world, if it’s possible, with a comparable condition. Hopefully someone that’s further along in the process that can look back and say, “Yeah, I was like this and now I did this and I did that, and this is what was fun and this is what wasn’t fun, and these are the outcomes that I’m happy about.” It’s not always possible, but we have a very large database of patients, and it’s pretty unusual that a family isn’t willing to be contacted.
Steven Fishman, MD
MBS: We try to do that if they ask or sometimes we suggest it if somebody seems to be having a lot of trouble dealing with the diagnosis and the physical manifestations of the disease. I think if the child brings it up or a parent says “I’d really like to talk to another parent who’s dealing with what I’m dealing with,” we try to make a connection for them with another patient or family. Often they want someone the same sex or around the same age with the exact same diagnosis. We do our best to have them talk with somebody we think would be a good person with whom to interact.
ES: Especially given the rarity of some of these diagnoses, the opportunities for peer-to-peer support is limited. Being able to connect our patients to support is always nice; I am always surprised how open our patients are and how willing they are to help each other.
Erin Spera, MS, CPNP and Mary Beth Sylvia, MS, FNP-BC
Is it ever hard to get people where the diagnoses are close enough that it’s helpful for them?
ES: Certainly, the more specific the criteria a family requests, the more difficult it is to match. Often the ages of the patients and the same gender give us the most challenges.
MSB: I think we’ve done pretty well in trying to find a good match. We’re very careful about someone we think understands the diagnosis and might even have had treatment and can explain what it means to go through sclerotherapy or have an operation.
Erin Spera, MS, CPNP and Mary Beth Sylvia, MS, FNP-BC