CREATING
A PLAN beyond symptom management
CREATING
A PLAN beyond symptom management
Your choices today can shape your tomorrow
From adjusting your plans to protect your skin to coordinating care for your overall well-being, you're continually making choices to stay healthy.
By partnering with your doctors and advocating for what you need, you can create a care plan that takes the totality of your condition into account.
From adjusting your plans to protect your skin to coordinating care for your overall well-being, you’re continually making choices to stay healthy. By partnering with your doctors and advocating for what you need, you can create a care plan that takes the totality of your condition into account.
Working together
for your well-being
Because EPP and XLP can impact different parts of the body, many people benefit from a team of healthcare professionals working together to support their overall well-being. Remember: your care team may look a little different from what’s shown here—what matters most is that it works for you.
Primary care provider
can help monitor your overall health
Hepatologists
can monitor liver function
Dermatologists
may help manage your
skin's reactions to light
Genetic
counselors
can help you understand
your condition and genetic
risks
Hematologists
may track your
blood levels
Mental health
professionals
can address the depression and anxiety
that often comes with EPP and XLP
Working together
for your well-being
Because EPP and XLP can impact different parts of the body, many people benefit from a team of healthcare professionals working together to support their overall well-being. Remember: your care team may look a little different from what’s shown here—what matters most is that it works for you.
Primary care provider
can help monitor your overall health
Dermatologists
may help manage your skin’s reactions to light
Hematologists
may track your blood levels
Mental health professionals
can address the depression and anxiety that often comes with EPP and XLP
Genetic counselors
counselors can help you understand your condition and genetic risks
Hepatologists
can monitor liver function
EPP=erythropoietic protoporphyria; XLP=X-linked protoporphyria.
Keep an eye on changes happening inside your body
Your doctors should be evaluating you at diagnosis to get a picture of your overall health, and then every year to monitor any changes that occur so your care plan can be tailored accordingly. These evaluations may include:
PPIX test
Complete blood count
Vitamin D test
Physical exams
Iron tests
Liver function tests
PPIX test
Physical exams
Complete blood count
Iron tests
Vitamin D test
Liver function tests
Find an expert in EPP or XLP
Sometimes early signs of complications—especially with the liver—require extra attention. If your test results raise concerns, you may want to talk to a specialist experienced in EPP and XLP. Patient advocacy organizations like the United Porphyrias Association (UPA) and the American Porphyria Foundation (APF) can help you find a doctor for your specific needs.
These links are provided for informational purposes only.
Work with your doctor on a long-term care plan
You have the power to take charge of your health. By advocating for your needs, asking questions, and regularly communicating with your care team, you can stay on top of your condition. If you haven't yet, start a conversation with your doctor about the underlying cause of your symptoms, and how you can create a plan to monitor your long-term health. Because you deserve a care plan that's much more than skin deep.
In their own words:
“I have a whole team of specialists, and many different medical teams that are involved in my care. It's important to advocate and speak up for yourself, because [EPP and XLP are] so rare. [It's] like the squeaky wheel gets the grease situation.”
— Person living with EPP
