What advice do you have for dealing with the chronic nature of the conditions?
I think that if you’re injured and you know that the cast is going to come off your leg, there’s one way of coping with that short-term traumatic event. However, when patients think, “okay, this is something that I’m going to have every day for the rest of my life,” there’s a different coping strategy. Ideally, through some of the procedures our center offers or different treatment options, some of the daily difficulties in functions will improve. However, for many patients with vascular anomalies there is no cure or strategy to make it go away. I think that’s a very different mindset in terms of coping, and I do think that in some ways that can lead to more difficult coping or patients feeling a little more depressed, sitting with that thought of “this is kind of forever.”
I think it’s acceptable to acknowledge that this isn’t fair, this isn’t going to be fun, and that there are down sides. I wouldn’t want to ever ignore those real aspects of living with a vascular anomaly, and giving those things names and giving people a time to talk about that. Yet there needs to be a strategy to mobilize out of those feelings. Is there a positive way to look at it, or is there a positive name, or can clothes be adjusted in a way that that can cover/minimize the appearance of the vascular anomaly? I think it’s important to address the specific concerns and learning how to cope and manage it every day so there’s not such a heavy burden, and I think what makes it not so heavy of a burden can be very different for different people. Some kids say, “If I’m covered up and I have people ask me less often, then that’s really what I can do.” Some kids who have pain associated with their vascular anomaly, that’s what really gets them weighed down and sad and feeling like there’s not a whole lot of hope, and so helping to adjust that pain and get that addressed could be what helps them the most.
Brooke Corder, MSW, LCSW
Are families ever concerned about the rarity of their conditions?
I think it’s always a concern. If they live away from the Boston area, often they’ll say “nobody knows what this is where I live” or “I go to the emergency room and they won’t touch my child because they don’t know what they’re looking at and it looks dangerous to them.” I think we get those comments from many families, that it’s very difficult to find someone at home who’s comfortable with the diagnosis and physical condition. Sometimes they’ve found at least one local physician of any specialty who is willing to learn about this rare condition and help the patient and family. It could be a dermatologist, a hematologist, somebody that they don’t necessarily need to see but someone who’s willing. So I think that’s always a concern.
Mary Beth Sylvia, MS, FNP-BC
How important is it to have someone to talk to?
It’s very important to have an outlet for confusing emotions and decision making. Some physicians and parents struggle when children choose others for this, but that’s perfectly normal. Siblings, peers, coaches, counselors, teachers, parents of peers and many others are valuable sources of support. It doesn’t have to be us but it has to be someone, because being alone with something, or hiding it under long pant legs year round, is not a healthy approach.
Cameron Trenor, MD
What advice do you have for feeling isolated?
For most people, thinking you’re the only one often makes coping more difficult. It makes things seem scarier and more isolating. While I don’t think I could say any of our patients have the same experience, knowing somebody else is having a similar experience can be invaluable. I often hear from parents is “I don’t have another parent to talk to. Nobody else quite gets this.” And the kids don’t have anybody to talk to because there aren’t kids that get it. Often parents and kids are coming in and saying “is there somebody else that looks like me? Is there somebody else who is facing things like this?” Since we focus on patients with vascular anomalies, if you’re looking for people with a vascular anomaly, the chances are we’re going to have somebody who has at least a similar condition or experience.
Brooke Corder, MSW, LCSW
What advice would you give families with rare disease about working with doctors?
You have to maintain some skepticism all along, particularly with things like this. In situations where the child has a very unique or unusual problem, I encourage the family to learn as they can; get second opinions, try to be up on the literature or consult doctors who are. This is something that families usually learn after a while. Oftentimes, families have consulted many physicians and they have not found one who can really explain what is known, what is not known, and how it is supposed to be approached because these are quite unusual problems. Many doctors, especially those outside big cities, may never have seen these things before.
Joseph Upton, MD