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PAPAA is marking Rare Disease Day today, 28 February, by shining a light on the lesser-known but serious forms of psoriatic disease that affect people and families worldwide.
Over 300 million people around the globe live with a rare disease, which is roughly 1 in 25 people. Many will know the most common form of psoriasis, called plaque psoriasis or psoriasis vulgaris, which causes itchy, flaky patches on the skin. But psoriatic disease is a spectrum, and some forms are much rarer, more severe, and often misunderstood.
Around 3% of people with psoriasis develop pustular psoriasis, a group of rare types that can be painful, debilitating, and sometimes life-threatening. These include generalised pustular psoriasis (GPP), where the skin becomes intensely red, painful and can peel across large areas of the body. Palmoplantar pustulosis (PPP) causes painful pustules and inflammation on the palms of the hands and soles of the feet, while acrodermatitis continua of Hallopeau (ACH) affects the fingers, toes, and nails and is even rarer.
Other serious, uncommon forms on the psoriatic disease spectrum include erythrodermic psoriasis, which is characterized by fiery red skin over most of the body, increased heart rate, severe itching, and changes in body temperature. Arthritis mutilans, a severe and deforming type of psoriatic arthritis, affects a small proportion of people with PsA but can have a devastating impact on mobility, independence, and quality of life.
This Rare Disease Day, PAPAA stands with everyone living with rare forms of psoriasis and psoriatic arthritis, as well as their families, friends, and caregivers. Together with the international psoriasis community, we are calling for better awareness, earlier diagnosis, and improved access to appropriate care for every form of psoriatic disease.