Being your own champion
You are your best advocate
Taking an active role in your care is critical when living with a rare disease. Since very few people have experienced generalized pustular psoriasis (GPP), it can be difficult for your dermatologist to truly know what it’s like living with the disease.
In fact, in a survey of 66 people living with GPP, many felt that their doctor did not understand the level of emotional, psychological, or physical pain their disease caused them.
It can help to raise questions, share your treatment expectations, and directly ask for what you need so that your doctor can understand your perspective.
Building a strong partnership
Improving life with GPP includes finding the most appropriate treatment and taking steps toward better well-being. Your dermatologist is a key partner in both.
During your visit, consider discussing:
The physical and emotional symptoms you are experiencing over time
How GPP impacts your daily life, including the ability to work, participate in activities, and socialize, and what is most important to you to change
Any other skin diseases you may have and how the treatments may differ
Your goals for treatment and what may need to change to achieve them
What actions you can take to help ease your symptoms and help keep them at bay
How you’ll track progress together
Prepare for your appointment
You’ve got this
Helping others understand your reality and asking for support can be tough. Here are some tools to help make it a little easier.
Advocating for your needs
