Being proactive
As far as getting the absolute best care, you kind of have to take it with a grain of salt. There are some times I go to my doctors here and I just tell them what I want. That, in the medical world, isn’t always appropriate. You’re the patient, you’re supposed to go in and be like “Oh I have this problem, how can you help me?” When I got an infection recently, I knew it was an infection and I knew I was going to need IV antibiotics. You try to do it in as nice a way as possible and you just hope that you get somebody who isn’t so offended by the fact that you’re kind of telling them what to do. Every once in a while, you do get that person, like “well you can say that but I’m going to do it this way.” You’re kind of at their mercy in that case, and when that happens, I just make an appointment to see somebody else who I know can probably get me what I need.
Sarah, young adult, Klippel-Trenaunay syndrome
Be very proactive and firm when you know what’s going on
It’s generally good everywhere to be very proactive and firm when you know what’s going on. I think in the past, I was sort of like, oh I want to be polite and let’s work in the social norms and now I’m a little bit more like, “hey I don’t mean to be telling you what to do, but this is what I think it is, I’m concerned that that if you take a blood test right now, you won’t get anything.” Anytime I have these infections, they usually can’t culture anything out of my blood and that can be a major hurdle in getting care because that’s what people expect; if you have an infection you should have some sign of it in your blood. So you have to go in, and right up front say, “I’m ok if you draw blood work, but I’m telling you I’ve had several infections where I’ve never had abnormal blood work, so I don’t want you to rule it out just because of that.”.
Sarah, young adult, Klippel-Trenaunay syndrome
This is what they’re going to do. This is why
Joe: Once I started being able to communicate with doctors and be able to understand what was going on better, I think I was able to talk to them more because I’ve been able to make more medical decisions on my own at this point. Before, my parents were making lots of decisions and I would get the general idea just as much as my sister would. Well, I would get it a bit more in detail, but she would get it.
Mom: Have you ever been confused about what we’re going to the doctor for?
Joe: Not after you told me. I mean, what the doctors were telling me, yeah—I’d sit there, I’d get surgery, I’d get tests, and they would have to give me the, “This is what they’re going to do. This is why.” And that would be in a medical non-version.
Joe, pre-teen, and mother, Reticular hemangioma
Don’t be afraid to ask questions
Don’t be afraid to ask questions to your healthcare providers. Be your child’s best advocate. Ask your specialists if they would be willing to introduce you to other families who are in similar situations. Get second opinions. Do your own research.
Emily, adult, Lymphatic malformation
They had never heard of what the heck I had
I have learned a lot from my parents about my condition, but also how to handle the insurance companies, with authorizations, referrals, all of that. Growing up with this, I learned all of that. My mom kept a binder; I have a copy of every paper since I was born. One day when something happens and you’re in the hospital, and someone will ask, “Well, what is this and what is that?” You’re trying to get stabilized at a local hospital, you aren’t at a specialized facility and they have never heard of what the heck you have. My husband has had to run home and get the binder. I have learned from my parents to be organized, know about my diagnosis and be able to teach people or inform them.
Lucy, adult, Blue rubber bleb nevus syndrome
You need to be in charge of your care
There are so many people that feel that their doctors are the one that knows them best, and they don’t understand that there might be other options that are better for them in their situation. I really try to encourage people, like my friends daughter who was just told she has some rare lung condition, as rare as what I have. She went to a regular lung doctor. I’m like, “no, no, no you need to find a specialist, a lung doctor who specializes in this syndrome.” You need to step up and you need to be in charge of your care, especially if you have something that’s rare.
Lucy, adult, Blue rubber bleb nevus syndrome