Stefanie Stoyanov

My mom was always used to telling me to compartmentalize, and she was a master of compartmentalizing. As you go through things in your life, you do learn that, and it's actually a really good way. You can get to the point where you're going to have that moment, but it's just not right now because you're the strong one right now. It's like they say on the airplane - you have to put the oxygen mask on yourself first before you can help anyone else. So take care of yourself so that you can take better care of them.

I think you need to spend some time getting to know these organizations so you understand the full breadth of what they are able to offer. The most simplest way is to dig into what they have to offer, understand what that relationship can be like, because you're going to be turning into that influencer with knowledge. So educate yourself, take the time, and it's such important work to be the person that's helping someone else. You have to always educate yourself because there's always changes. Be resourceful and rely on your support, rely on your team from all of the subspecialties in order to be more well-rounded in the full expertise. Talk to so many different people, because everybody could be responding to a different delivery mechanism or a different way that a person shares.

I think there is still, unfortunately, so much opportunity to ensure that every person, not just the patient, but every person, patient and caregiver knows that there are patient advocacy organizations out there that can provide them information, education, and at many times solace, especially when they have a diagnosis. It's very difficult and you need someone to lean on. Not everyone has someone to lean on, but they need to know that these organizations are out there and they can be that stronghold for them when they have the most difficult time of their lives. I'm surprised always that there are people that fall through the cracks and don't know that it's out there. I feel like it's my mission in life - my entire team knows this - I tell everyone about patient advocacy organizations.

I know how lucky I am and I am very grateful, spiritual, religious, and I love to give back because I have been so blessed. My mother always told me that you come in this world one way, but make sure before you leave out of this world you make it a better place. When you're in it and you're living it, balancing knowledge and emotion is something that you grow with and learn. You have to have composure and understand that they may be leaning on you hard because they're at such a vulnerable point, and you're the strong one. You have to be present, you have to be strong, and you have to step into that role and own it and be it and help that person. It's such important work to be the person that's helping someone else.