Back toUpdated on October 16, 2024
Living with acute hepatic porphyria (AHP) can be difficult, especially if your friends and family don't understand the condition. Watch this video with Jennifer Caudle, DO, for facts on AHP and how to share information with the people in your life.
Transcript
Living with a lifelong disease like acute hepatic porphyria can be difficult, and it can be even more so when
those around you don't fully understand what you're going through. [MUSIC PLAYING] That's why it's important to consider talking with those you
trust about your AHP-- your friends, your family, maybe even your co-workers-- to help them better understand your situation
and the challenges of living with a lifelong disease like AHP Here's some conversation starters to consider.
AHP affects people differently. Acute porphyrias include modes of the disease that can cause severe nervous system symptoms, which
can appear quickly and last for days, even weeks. These attacks can often result in hospitalization.
AHP attacks predominately affect young women, but no two people experience AHP the same way.
So it's important for people to understand how it affects. AHP mimics other diseases. Misdiagnosis for AHP is common, partially
because its symptoms can resemble all sorts of other diseases and conditions. Typical common-presenting symptoms or abdominal
pain with nausea, vomiting, and weakness. As a result of the varied and often vague symptoms, an AHP diagnosis can be missed or even delayed,
and patients may end up getting unnecessary treatments and surgeries in an attempt to fix the wrong thing.
Attacks can come on at any time. AHP can cause unpredictable and severe attacks that frequently
result in hospitalization, which can understandably affect your work, your school, and social lives. Chatting with your manager, professors, or even friends
about the possibility of future absences due to AHP may help them be more supportive in the future. AHP triggers can be wide-ranging.
Having others be cognizant of your triggers for AHP attacks may help you avoid them in the future, and may help those in your life better understand
if you opt for club soda instead of a beer at happy hour, for example. Family. Talking to your family about your AHP
is important for two reasons. One, so they can learn how the disease affects you, and how they might be able to better help you cope;
and two, so they might consider getting genetic testing for AHP. Family members may be completely asymptomatic,
but may still be at risk for the disease. The more the people in your life are educated on the nuances of AHP, the better
