In November 2018, the ISF, supported by AbbVie, held the first-of-its-kind ‘Skin Matters’ meeting and webinar for people living with hidradenitis suppurativa (HS).
Through a panel discussion with HS patient advocates, Suzanne Moloney and Barry McGrath, Consultant Dermatologist, Dr Anne Marie Tobin, and GP, Dr Catherine Wilkinson, the meeting aimed to explore common problems and issues for people with HS and provide answers to some of the frequently asked questions for those living with the disease.
The webinar video has been developed in to a series of short video snippets to provide people affected by HS with practical information and guidance on their condition. The ten-part video series explores a number of different topics in relation to HS, from explaining what HS is, the common causes, the impact on quality of life and mental health, as well as the benefits of smoking cessation and weight reduction on disease outcomes.
- Related: More information about HS
- Related: Full HS ‘Skin Matters’ webinar video
- Related: Study indicates incidence of HS appears to be doubled among smokers
We would like to thank AbbVie, our panelists and our moderator, Virgin Media presenter, Claire Brock for their time and help in creating what we hope will be a valuable information resource for people looking for more information about HS.
Check out all ten videos below!
What is Hidradenitis Suppurativa (HS)?
What causes HS?
Summary
There’s nothing bar the history that gives you the diagnosis…it’s if you are getting recurrent, painful boils under your arms or in your groin over a six month period… There’s definitely some genetic component.
Impact of HS on quality of life
A patient perspective on the impact of HS
Summary
When they get their diagnosis… even if it is a different diagnosis, there’s a great sense of relief for that patient, and validation for them.
Even basic tasks – dressing… having a shower, cooking, cleaning, things like that, all became excruciatingly difficult.
Importance of early diagnosis of HS
HS & mental health
Summary
Hidradenitis is associated with higher rates of depression and anxiety…to patients who are suffering from mental distress, please make an appointment with your GP…Oftentimes your local GP will know of local low-cost counselling services.
Talking to your GP about HS
HS & smoking cessation
HS & weight reduction
Summary
The positive thing here is that even small reductions in weight can make big benefits…your GP can refer you to your local HSE dietitian…there will be a bit of a wait-time but they can initiate the referral… HSE dietitians run weight-loss programmes that you can actually self-refer to.
Dressings for HS
Summary
There are ways of getting dressings reimbursed… one of the best ways of getting them…is being engaged with the public health nurses… because they often have access to the dressings.
*Being in touch with other people who understand what it is like to live with HS can be really helpful. If you would like to get in touch with the private Facebook HS Support Group, where you can talk to other people with HS, contact Barry at hsireland@outlook.com or follow on Twitter @hsireland1
For more information about HS, visit our main HS page. If you need help or guidance about managing your HS, ask our dermatology nurse.
