New educational resources on hidradenitis suppurativa have been designed for anyone wanting to learn more about managing this debilitating condition.
Hidradenitis suppurativa (HS) is a debilitating, chronic, complex inflammatory condition that causes painful, boil-like abscesses that can recur.
It is caused by a combination of a dysfunctional immune system and altered cell behaviour around hair follicles. HS is not contagious and is not due to poor hygiene or obesity.
HS affects many areas of life, including physical health, mental wellbeing, relationships, emotions and finances.
In Australia, HS is thought to affect approximately 0.67-1% of the population. However, getting a diagnosis can take years, and many people with HS may be misdiagnosed. Therefore, the real number could be much higher.
WHAT HS PATIENTS NEED FROM HEALTH PROFESSIONALS
Steph Friend, Founder and Director of Hidradenitis Suppurativa Australia (hidradenitissuppurativaaustralia.com.au), has lived with HS for 25 years. She knows first-hand the toll it takes on patients.
“HS impacts every aspect of life. Socially, psychologically, emotionally, financially. I mean work, studying, relationships and friendships. There is not a piece of your life that HS doesn’t touch. If I could give any healthcare professional — GP, specialist, dermatologist, surgeon, nurse — any healthcare worker — a piece of advice, it would be to really hear us, believe us and help us.
One barrier to care is not getting referred on and having to see multiple GPs to get a referral to a dermatologist. But you are our first port of call. You are the foundation of our healthcare. So, we need you to be our advocates.”
Early diagnosis is crucial for effectively managing HS. However, misconceptions can prevent people from seeking treatment or getting a proper diagnosis. Many people (including health professionals) mistake HS for conditions that can look similar, such as acne, boils and cysts.
Unfortunately, people live with HS symptoms for around seven years on average without a correct diagnosis — and by the time they are diagnosed, 70% of patients already have moderate-to-severe disease.
Global Healthy Living Foundation Australia (GHLF Australia) has published a range of practical resources to help anyone wanting to know more about this debilitating skin condition. As healthcare professionals, you can use these resources to improve your understanding of HS.
PATIENT-FRIENDLY ONLINE HUB
We created our Hidradenitis Suppurativa Education and Resource Hub as a go-to resource filled with disease information and expert advice to help people live well with this condition. We believe having this information at hand empowers HS patients to talk with health professionals and better manage their conditions.
The GHLF Australia Hidradenitis Suppurativa Education and Resource Hub includes:
- A straightforward summary of HS causes, symptoms, diagnosis and comorbidities.
- An overview of current proven treatment options.
- Tips for living well with HS, including pain management, skin and wound care, family planning and coping strategies.
- Suggestions for building a multidisciplinary care team
- Links to support organisations
A PATIENT’S GUIDE TO LIVING WITH HIDRADENITIS SUPPURATIVA IN AUSTRALIA
Co-designed with Hidradenitis Australia, this free, downloadable, user-friendly guide empowers patients to:
- Take control of HS through knowledge
- Review their treatment options
- Build support systems
- Manage the impacts of HS
- Identify solutions to challenges
- Advocate for their needs
HS WEBINAR FOR HEALTH PROFESSIONALS
This webinar – Hidradenitis Suppurativa (HS): From Early Recognition in Primary Care to Specialist Management – designed for health professionals, was a collaboration between GHLF Australia, Hidradenitis Suppurativa Australia, Dr Monica Narula (GP) and Dr Helen Saunders (dermatologist).
Beginning with a powerful personal story by Steph Friend, the webinar aims to increase awareness of HS among primary health care providers, provide practical information about diagnosis and treatment and elevate the standard of care for HS patients.
Help us spread awareness of these comprehensive HS resources by sharing the links with your HS patients and colleagues.
FOLLOW OUR WORK
The Global Healthy Living Foundation Australia (GHLF Australia) is the parent organisation of CreakyJoints Australia (CJA) and forms part of our international GHLF and CreakyJoints networks.
You can sign up as a GHLF member and join a nationwide community of like-minded people who are passionate about improving the healthcare system for those with chronic conditions.
We also invite you to like, follow, and share our CreakyJoints Australia content on Facebook and Instagram, and our GHLF Australia Facebook Page.
For more information about GHLF Australia see here, and for CreakyJoints Australia see here.
Rosemary Ainley wrote this article on behalf of the GHLF Australia and CreakyJoints Australia team. We want to thank The Medical Republic or this opportunity to share the patient voice with Australian health professionals.
