Frequently Asked Questions

Is it contagious?

No, HS cannot be passed to anyone else in any way

 

Is it a rare disease?

No. A rare disease is has a prevelance of approximately 1 in 2000. It is estimated that around 1% of the population suffers from HS, though it may be more due to many cases being misdiagnosed, and patients not coming forward due to embarrassment.

 

Is HS an autoimmune condition?

HS has not been classified as an autoimmune condition, however it is widely believed to be associated with the immune system, and is widely thought to be an auto-inflammatory disease. HS is also part of the auto-inflammatory PASH syndrome.

 

Is this an Infection/STD/STI?

No, it is not by an infection. HS can not be sexually transmitted

Have I inherited the disease, and will my children develop it?

Possibly, approximately 30% of cases have a family history of HS

How can it affect my life?

HS can affect your life in many ways, from just having to wear dressings, right up to hampering your ability to work. Due to the areas that it can affect, the ability to lift or walk could be an issue, making everyday tasks such as shopping, housework or cooking quite difficult. Of course all cases will be different, meaning everyone will be affected differently.

Can a sufferer be classed as disabled?

Yes, in the advanced stages, HS can become disabling. With the appearance of painful nodules and discharge, it can have a major impact on the quality of life of a patient. Affected patients suffer a significant morbidity and it is evident that HS has a psychological impact on a sufferer, with clinical depression being a common side affect.

Is this a life long illness?

There is currently no cure, or specific effective treatment for HS, so unfortunately it is life long. Although it is possible for some patients to go into temporary remission if treated early, the majority of sufferers will require constant disease management in order to keep the condition under control.

 

Is HS caused by being obese/overweight?

No, is it not caused by being overweight, however sweaty skin folds can aggravate the illness

Does smoking cause or aggravate HS?

HS is not caused by smoking, however smoking does indeed affect the skin and could therefore aggravate any HS present. Some HS sufferers have never smoked

Is HS caused by poor hygiene?

No

Can you develop HS through blood transfusion?

No

Can I still donate blood?

Although HS itself will not stop you from donating blood, some of the medications used may not allow this.

Does stress affect HS?

Stress may contribute in worsening the symptoms, but is not a cause of the disease

Can I still go swimming?

If severe leakage is present, it may be best to avoid public swimming pools

I am pregnant, can it harm my baby?

The risk to your baby during pregnancy is practically non existent, however, if severe leakage is present in the vaginal area at the time of birth, there may be a small risk of bacterial infection. Cesarean delivery is an option to prevent this.

Can you screen for the disease?

No

 

What are the methods of diagnosis?

Diagnosis is made by examination and investigation. As infection is not the cause, there is no specific bacteria to look for. Certain questions would need to be answered, such as family history, frequency of recurrent lesions, location of lesions, etc.

Swabs or biopsy may be taken, and although they normally appear clear, it is necessary to eliminate other diseases or causes, and although HS itself is not an infection, secondary infections may occur due to open wounds and lesions being prevalent.

How can it be treated?

Unfortunately there is no cure, but ongoing treatment is possible to help control any flaring lesions. A variety of medication is available, however there is no specific treatment for everyone, so trial and error is the way to go.

Copyright © The Hidradenitis Suppurativa Trust 2018. All Rights Reserved. 

Charity registered in England and Wales 1177819 and Scotland SC048376 

Registered Head Office:

Cliffe House, Anthonys Way, Rochester, Kent, England, ME2 4DY.

Contact: Enquiries@hstrust.org

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