Our Hidradenitis Suppurativa (HS) awareness campaign began on March 6th with the aim of encouraging those potentially living with this chronic skin condition to reach out and seek information about the disease.
The campaign was entitled #Five17Eight, so called because a new Irish study found that a HS diagnosis can take up to eight years, while international survey data suggests that during those eight years, people living with HS can see as many as five different healthcare professionals and attend 17 appointments before a correct diagnosis of HS is established.
As part of the campaign, we launched a new online hub to increase awareness of HS and encourage open discussion about this often stigmatised condition. The hub contains videos and a blog from individuals living with HS, detailing often frustrating, painful but inspiring journeys to establish a diagnosis and get the condition under control, as well as Ireland’s first ever dedicated HS booklet which can be downloaded from the site.
As a part of the initiative, a number of people living with HS very generously gave interviews about their experiences, and we have been directly informed that the articles that subsequently appeared in the national and regional press have helped many others living with this condition to seek more information, as well as reduce feelings of isolation.
The ISF is very pleased that this campaign is helping to raise awareness and encouraging those potentially living with HS to seek the support they need, as evidenced by a sharp increase (36%) in membership to the HS support group, as well as calls about HS to the ISF nurse helpline.
We also hosted two really successful HS Community Meetings for people with HS and their supporters in Dublin on April 5th and Cork on April 19th.
We are very grateful to all those who participated in this campaign but would particularly like to thank Barry McGrath (patient advocate), Dr Anne-Marie Tobin (Consultant Dermatologist, Tallaght Hospital, Dublin), Dr Michelle Murphy (Consultant Dermatologist, South Infirmary Victoria University Hospital, Cork), those who generously gave interviews to share their stories, and AbbVie, who supported the HS awareness campaign and meetings.
