Lived Experiences with Rare Psoriatic Disease

Psoriatic disease is more than skin deep, and the burden of living with these diseases goes beyond physical discomfort.

A recent study looked at the impact of Generalized Pustular Psoriasis (GPP) from the perspective of people living with it. The results reveal a significant emotional burden and wide-ranging impact on daily activities. GPP affects one’s ability to wear shoes, run errands, or do household chores. Stigma impacts the experience of socializing with friends or being intimate with a partner. These are in addition to difficulties in reaching diagnosis and satisfying treatment. The results clearly show an unmet need for emotional support of people living with GPP.

What’s more, this unmet need is not unique to people living with GPP. Doctors often underestimate the emotional impact of psoriatic disease on their patients. For people with rare psoriatic diseases, it can be even more challenging to find adequate information and support, even from patient groups. IFPA is committed to meeting these emotional needs and creating spaces for people with rare diseases to find each other. By working with national associations and our partners in healthcare, we can lighten the burden for people living with rare psoriatic disease.

Do you recognize yourself in these findings?

IPA’s rare disease campaign week puts a spotlight on lived experiences of people who have rare psoriatic diseases. Participate in the campaign by sharing your story on social media and following #DOyouRECOGNIZEyourself.

Looking for support? We can help you find advocacy groups, materials, and discussion forums. Contact us at info@ifpa-pso.com.