OTTAWA, ON--(Marketwired - April 18, 2017) - From the onset of their first symptom, individuals living with the painful skin disease hidradenitis suppurativa (HS) struggle with finding adequate care. New survey results show that the average route to diagnosis takes nine years. In this time, individuals receive three misdiagnoses, while 62% have more than seven family physician appointments and 30% make over 10 emergency room visits for symptoms. A lack of disease awareness among healthcare providers is evident, despite HS affecting up to 4% of Canadians.
The Canadian Skin Patient Alliance (CSPA), in collaboration with Canadian HS Foundation and HS Aware, conducted the online survey with 167 individuals living with HS, to better understand patient experiences and needs. HS is a chronic skin disease characterized by painful boils and discharge in areas including the armpits, groin, and underneath the breasts.
HS impacts every aspect of patient life including the ability to maintain a career and personal relationships. The survey results indicate that two-thirds of patients with HS suffer from depression. According to Kathryn Andrews-Clay, Executive Director of the CSPA, "those with HS often feel shame and fear of judgment due to their very visible symptoms." Of those surveyed, less than 10% receive psychosocial counselling, though almost all seek guidance and comfort through online support groups.
Patients attempt multiple medical and natural treatments to control symptoms and manage pain, though most offer little or no improvement. A clinical study found that Adalimumab (Humira) reduced HS abscesses in half of patients with moderate/severe disease. Humira is reimbursed for HS in 22 countries, including the United States, but is not currently covered by provincial health plans in Canada.
The findings of this report highlight the need to increase HS awareness and education among healthcare providers, and develop information resources and social support to help patients manage the tremendous medical and psychological impact of this disease. Visit http://www.canadianskin.ca/images/Documents/CSPA_Report_March_22_2017_website_final.pdf to read the report in its entirety
The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocate, educate and support Canadians living with skin diseases, conditions and traumas. The survey was funded by a grant from AbbVie Canada, and was conducted by JRL Research & Consulting Inc.
The Canadian HS Foundation (CHSF) is a national non-profit organization dedicated to improve the daily life and quality of care for Canadians living with Hidradenitis Suppurativa through education, research and patient empowerment.
HS Aware is a community dedicated to people living with HS. This is where you will find people, information and understanding.