New Survey Documents Concerns of People With Psoriasis

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New Survey Documents Concerns of People With Psoriasis

by Mary Shomon

July 2004 -- Relationship issues, society pressures and social embarrassment profoundly affect the millions of adults who suffer from psoriasis, a chronic, debilitating skin disease that often leads to a reclusive lifestyle. Findings from a new survey conducted among people with moderate to severe psoriasis confirm that having this autoimmune disease creates significant problems with social and personal relationships.

The national survey examined the feelings and attitudes of 502 patients with moderate to severe psoriasis. Results emphasize the impact of psoriasis on intimate relationships, social activities and other aspects of daily life. One of the most dramatic survey findings indicates that 74 percent of people with moderate to severe psoriasis are uncomfortable in public, especially when their psoriasis flares up. In addition, eight in ten people with severe forms of the disease do not want to be seen in public.

"As an active person, my social life was significantly affected by psoriasis when I was diagnosed at age 19. As the symptoms got worse I stopped doing activities that I'd always enjoyed," said Tom M., a 40-year-old person with psoriasis. "I quit going to the gym and I let psoriasis take control of my daily activities because I was afraid of how others would react."

Indeed, social trepidations and relationship issues dominate the worries of people living with moderate to severe psoriasis. In the survey, 48 percent of the participants indicated they worry that their partner is embarrassed by their condition.

For a single person, however, that embarrassment extends to intimacy issues, with over half of those interviewed expressing problems in their sex life (30 percent of married people with psoriasis also report difficulties).

Other survey findings showed:

78 percent indicated psoriasis affects their daily interactions with others
More than half surveyed stated that psoriasis affects their relationships with family and friends
73 percent of those with severe psoriasis agree that their self-confidence is affected by the disease
1 out of every 4 people said they avoid physical contact with those close to them due to the disease
Nearly half of all singles said they would pursue more relationships if they did not have psoriasis
Half of those who are married said psoriasis affects their self- confidence

In addition, 85 percent of people with psoriasis said they do not believe that society understands the disease, and 73 percent said they do not believe society finds the disease as debilitating as other chronic diseases. Most Americans that are aware and understand what psoriasis is, do not know that 4.5 million Americans have the disease or that psoriasis is as debilitating as diabetes or heart disease, or that psoriasis is not curable.

"Sometimes people with psoriasis seem so overwhelmed by their insecurities they forget that their friends, family and relationships can also be affected," said Melodie Young, MSN, RN, ANP-C. "First, accept that your loved ones love you, and want to help you. Help them understand what you are feeling, your discomfort, and your fears. Talk about it and figure it out together and remember that relationships are not just mental but emotional as well. Our hope is that Beyond Psoriasis will be of comfort to those who are feeling misunderstood and can find support and practical advice to help them navigate through their social difficulties and relationships."

Beyond Psoriasis: The Person Behind the Patient

In response to the need for increased public awareness and support of people with psoriasis, the National Psoriasis Foundation, Dermatology Nurses Association, leading dermatologists and people with psoriasis have collaborated to launch Beyond Psoriasis: The Person Behind the Patient. Beyond Psoriasis provides education, hope and empowerment to individuals to help them take better control of their disease and their lives. Beyondpsoriasis.com is a website that provides people with psoriasis a new resource that offers information, coping tips and lessons learned by others with psoriasis on managing the emotional and social challenges of this disease.

About Psoriasis

Psoriasis is a chronic, autoimmune disease characterized by highly-visible, thick, red, scaly inflamed patches on the skin's surface, resulting from inflammation with resultant accelerated skin cell turnover. Patches can be few in number limited to a few spots or involve extensive areas of the body, appearing most commonly on the scalp, knees, elbows or trunk. People with severe psoriasis are affected on more than 10% of the body surface. Psoriasis also can be considered severe if it is prevalent in areas such as the hands, feet, face or genitals, where disease can strongly impact physical and social functional abilities. Once a person is affected, the disease typically persists for the remainder of a patient's life. Although highly visible, psoriasis is not a contagious disease. While there is no known cure for psoriasis, there are a number of treatment options available including topical medication, phototherapy, systemic and biologic injectable therapies.

About the National Psoriasis Foundation

The National Psoriasis Foundation is the leading nonprofit organization fighting to improve the quality of life of the more than 5 million Americans diagnosed with psoriasis and/or psoriatic arthritis and their families. Its mission is to educate people about these diseases and their treatments, raise public awareness, and support ongoing research. The organization is headquartered in Portland, Ore. For more information, please call the Psoriasis Foundation at 800.723.9166 or visit their website psoriasis.org.

Psoriasis is one of the topics covered in the best-selling book Living Well With Autoimmune Disease by Mary Shomon, now in its 4th printing. The book discusses holistic and complementary ways to rebalance the immune system and reduce the severity of the autoimmune process, including those inherent to psoriasis.

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