talkhealth forums

Why is this condition relatively unknown & why are sufferers left to suffer alone?

Hi there , this is a really nasty condition and can make people feel awful. Does anyone know of any good resources such as forums / charities / chat rooms for this condition? Dr Webberley

Hello - many thanks for your question.

HS can be an extremely difficult condition to manage but research remains ongoing in this area. Treatments can range from taking long-term antibiotics to injection therapies that suppress the immune system (e.g. adalimumab, infliximab).

The HS Trust is a UK support group http://www.hstrust.org - I wonder if it may be of benefit for you to get in touch with them? I agree, that it is important to ensure we aren't leaving patients to suffer alone and are providing people with the avenue of support they need.

I also would recommend speaking with your dermatologist and making them aware if you are feeling isolated. They may be able to recommend a clinical psychologist interested in skin that will help talk through issues. We are increasingly recognising what profound effects skin disease can have on the well-being of the mind and often talking things through may help.

If your disease is severe, then referral to a specialist centre that deals with HS is also a reasonable option. I am uncertain of your location, but there is certainly a specialist clinic for HS in London.

I hope you find my comments helpful and I wish you the best of luck.

Best wishes,

Dr Anjali Mahto

Dear Caldeeray,

Thank you for you question. I have a special interest in managing this awful condition. This maybe a notoriously difficult disease to treat and generally it is very undercognized by general public. This is why we in collaboration with patients recently conducted a priority setting partnership for HS to define together 10 top priorities for further clinical research ( http://www.jla.nihr.ac.uk/priority-sett ... uppurativa
and
http://www.ncbi.nlm.nih.gov/pubmed/?ter ... artnership
)

The treatments currently available range from oral antibiotics and antiseptic washes to very powerful injections called biologics. If it is of any use, you can see more information about HS
on my website www.alexandroff.org.uk

I hope this is helpful.
With best wishes,

Dr Anton Alexandroff MCP(UK) CCT(Dermatology) FAAD FRSM
Consultant Dermatologist in Leicester Spire and Nuffield Health Hospitals and University Hospitals of Leicester
Member of the British Association of Dermatologists
www.alexandroff.org.uk
twitter: your_skin_dr