Explore these everyday stories from people living with PNH
You + your doctor =
more of the life you want
Hi, my name is Erin, and I have been living with PNH for 3 years now. I want to talk about advocating for what you want, particularly when it comes to your life goals.
My first piece of advice is to be as open as possible with your doctor when sharing your goals. This can relate to things like traveling, especially if you want to travel for a lengthy period of time. Like many things with PNH, they have to be planned out. Open communication with your doctor will allow them to develop a plan to help you make progress toward that goal or modify the goal so it better fits within your PNH journey. It will also help keep them informed of what’s going on with your life.
It’s also helpful to give your doctor as much notice as possible so they have enough time to help you prepare and plan. For example, you may have a life goal that requires your doctor to do more research, or they may need to develop a plan that will work with your PNH journey and goals.
Another helpful strategy is to collaborate with your doctor.
It’s important that you and your doctor are having meaningful conversations. It can’t be a one-way street, especially if it relates to bringing in other doctors. For example, my maternal health is very important to me. My doctor and I built a team with my Ob/Gyn to make sure everyone is on the same page and communicates regularly. Building that collaboration between your doctors and keeping the lines of communication open is very important.
The next piece of advice is to communicate openly as much as possible, particularly about any symptoms you may be experiencing, to ensure that all of your doctors are in communication together. Be sure to inform them about any changes to your health, new medications, or anything new going on in your life to help make sure everyone is on the same page.
My last piece of advice is to be assertive, yet calm.
There may be a time when you night feel like your doctor isn’t on board with a particular life goal. It can be easy to get frustrated, but it’s important to stay calm and always keep in mind that you are on the same team. You both have the same end goal, and that is to keep you on track with your PNH journey. Be assertive but calm in what you’re looking to achieve, even if that means shifting your goals to prioritize your health. But also remember they are there to help you, and the more information you can give your doctors, the more they can help you find the right path forward.
I hope this information is helpful and that you achieve your goals.
Let’s not let PNH hold us back!
The above represents a real person living with PNH, telling their story in their own words. This individual was compensated by Apellis for the time required to share their story. Every person’s experience with PNH is unique. This story does not include individual treatment or medical advice. You should speak with your doctor about questions you may have about PNH, its symptoms, and treatment.