Stephanie knew absolutely nothing when she went into the diagnosis, but she has devoted herself to creating more resources including her own experience for more people to refer to when they need them.
“And this is part of the reason why I introduced the fact that I'm an Australian living in the Netherlands at the time. I spoke with very little Dutch, and we were referred to medical journals, a Wikipedia page, and a website in Dutch. And there were literally those three things were the only things that we had to refer back to. And that was one of the reasons why I started writing about my own journey was because there was very little information out there, so there were no resources. Now there are resources available, not only the ones I've created, but TAPS is becoming more widely recognized. So many, even though the information may not be the best quality. I'm very particular about the information that's out there about it, but it's not so much only that there is information out there that patients can Google for and they can find valuable and important information. But at the time, absolutely nothing.
“We write a lot of our own content. We put a lot of time into creating original and new content and bringing the latest updates. So it's very limited with TAPS information, but what we try to do is also bring in a little bit more from outside related diseases or twins in general, particularly long-term effects of just monochorionic twins. Because in our community we have a high rate of neurodevelopmental impairment. But even uncomplicated twins need follow-ups. So we try to, hey, we focus on TAPS, but we also like other twins. So we're fighting for all twins.”
Stephanie’s nurses and doctors helped her understand the condition better.
“They shared diagrams, they explained it. Just one on one, showed pictures. They talked about things. I do not remember much about my first appointment, but that's because the overwhelmed, scared patient. But in the second appointment where I told you the story of the doctor who explained everything, he drew pictures. And that was just for me. I'm a visual learner. So for me, that's really important. As soon as I see what's going on on paper, I get it. If you want to go into it specifically, I see and then I do. I'm a visual kinesthetic one. When I see it on paper, I go, oh, that’s what’s happening. And just taking the time to make sure I understood it. That was really okay.”
Although there were not exactly which doctors made a difference for her, many doctors with who she felt comfortable shared the same qualities and worked as a team.
“I'll answer it in a now context because I think it's easier because at the time it was eight years ago, so I don't really remember a lot of it. There was a lot of rotation through the doctors. If I had to say my favorite neonatologist, it would have been, of course, Dr. La priori at the time, he was incredible. But again, TAPS is his baby, and he had TAPS twins in the hospital. So we had a lot of not extra-special attention, but just he wanted to make sure we understood it.”
“But now, when I look at long-term effects and when we do follow-ups and things like that, our own GP is wonderful. She's very invested in the girls, and she loves working with them. And if I call her and I have a concern, she's [like], “Okay. I don't understand what this is about. I don't understand much about the disease, but I know you do. So you're not asking for this just because you want it. You have a cause for concern.” I called her the other week and I said, oh, is that the dentist with Emily, and the dentist mentioned her gums are a bit pale, and I've noticed she's a little bit tired at the moment, so can I have an immediate test? She hasn't had one done for a few years. And doctors like, oh, no, fine. Our GP is great.”
“We have a fantastic psychology team who look after the girls and gave them the autism diagnosis and then also in the long term effects, research their doctors, Dr. Ikon and Dr. Van Clink, who are very invested in following up the girls and making sure that their development is good, but also using that information for research. They're fantastic. So there's like a lot of them. Very hard to tell you exactly which doctors made a difference. It's a team. And I think that's really, really important is that as I said, healthcare is teamwork, and the patient should actively be part of that team collaborating.”
“What do you think patients can do to help doctors treat them?”
“I think I'm going to say question everything, but I think I'll explain what I mean by that. And that is not so much saying, why are you doing that? What are you doing? It's more along the lines of okay, I understand that you're concerned about something, but can you explain it to me in a different way? What are my treatment options? Do you know of anyone who is an expert in this field, who I can reach out to? Do you have patients who I can reach out to, who I've had this diagnosis? That's really what I think is really important is doctors need to be aware of the community resources that are there for patients as well. But as patients, you need to ask questions and don't be afraid to Google things, but I always tell people it's okay to Google things, but you need to take it back to your doctor, and you need to discuss what you have found with them. Because doctor Google is not reliable. He's a good resource, but the content is not reliable. You need to take it back and talk with your doctor.”
“What changes would you like to see in the future healthcare system?”
“I would like to say that medical care should be accessible for everyone. And I know that we are fortunate in the Netherlands that we have a very good health care system and things like that. But I do know that across the world, this is not the standard of care. I think there should be much more awareness raised for rare diseases. Just in relation to international collaborations, all those kinds of things. But I think also what needs to change in the future of health care is instead of having doctors up on pedestals and being this almighty person who cannot be questioned, health care is teamwork. That's really what it comes down to. It's about being part of a team. Everyone is invested in your health. So everyone is on the level playing field. ”
“And also I think for doctors to recognize and this is another pet peeve of mine is that sometimes a patient will walk into a room and they will know more about their medical history than you do. And that's okay. It's not an attack on your knowledge, your education, your skills, your length of time that you've been a doctor, just take the time to listen. I think open listening, open communication is a really big factor.”
“It's something that I'm privileged to have in my life in relation to my foundation. We really love to say that we are a big team, and we have everyone from myself to one of my very good friends who is our treasurer and a guy I know that I used to work with. We formed the board and my husband, and then we have doctors who are, like, internationally famous on our board. We all get together and we're just one team of people that have one mutual passion. And I think that's a really important demonstration for the world it is.
It is eye opening to see the different statements from people from different parts of the world, because there's a great difference from listening to someone in the US to someone in Central America to Stephanie in the Netherlands. It's different to see how the health care system treats each one of us.
“And I think also in my experience of being an outsider in the Netherlands, because let's not forget, I am Australian, technically, but I've lived here for ten years. And when I look at what I experience here and how different it is to Australia again, it's a very different thing. I'm not sure that I would be best buddies with the research team or have the contacts that I do for in relation to research. I wouldn't have necessarily had the same experience in Australia. I don't think it would have been a lot easier because it would all have been in my language. But I don't necessarily think I would have had a similar outcome if I was in Australia. So it's a very interesting perspective.”
Being reflective of her experience, Stephanie believes that it is important for patients to keep looking for a community in which they are willing to share their experiences, especially when they had a challenging diagnosis. This process is definitely harder with rare diseases where sometimes it is the patient to create this community for everyone.
“I think that when you have a challenging diagnosis, it goes one of two ways. You either become very bitter and you don't want to talk to people about it, or you want to tell everyone about it. It may not be a positive experience, but you can always have a positive or a negative experience, and that goes for both sides of this coin. The people who don't want to talk about it or have had a positive or a negative experience, and they just want to keep it to themselves. But when you find and it's very much so in the redesigned community, when you find that you have a positive experience or a negative experience because you look for a tribe, or you look for a network of people, and so you start talking about your story. And I think that's really what makes it is that as a patient, you look for a community and you want to talk with other people about your experience. And I know that's my experience, but everyone is looking for answers, support and friendship. Sometimes you can only really find that with people who have shared the same journey."
Comentários