How To Live With Hidradenitis Suppurativa?

Hidradenitis suppurativa is a chronic skin condition that causes small and painful lumps to develop underneath the skin. These lumps can break open or form tunnels under the skin. Hidradenitis suppurativa commonly affects those areas of the body where the skin rubs against the skin, such as the groin, armpits, breasts, and buttocks. Hidradenitis suppurativa usually begins after puberty, and it can continue for many years, worsening over time if you don’t seek treatment. There can be some serious side effects of this disease on a person’s daily life as well as their emotional and mental well-being. Most people are unaware of what hidradenitis suppurativa is, and therefore there is also a lot of myth associated with this type of skin condition. Here are some things to know that will help you learn how to live with hidradenitis suppurativa.

What is Hidradenitis Suppurativa?

Hidradenitis suppurativa is a rare type of chronic skin condition that affects just about two percent of the global population.(1,2,3) This skin condition can occur in different forms but usually presents itself in the form of small, pimple-like bumps or lumps. They can also take on the appearance of deeper acne-like nodules or even appear like boils. Even though hidradenitis suppurativa is not classified as a form of acne, it is sometimes still referred to as acne inversa.(4,5)

The lesions that develop in people with hidradenitis suppurativa are painful and tend to affect areas of the body where the skin rubs together, such as the groin or armpits. The affected areas vary from person to person.

Many people are unaware of what hidradenitis suppurativa is and how difficult it is to manage and live with. In most people, the condition tends to begin after puberty and can continue for many years, worsening over time, especially if left untreated. The disease has severe effects on a person’s day to day life, along with their emotional and mental well-being.(6) The condition is different for every person, so it is challenging to predict exactly what the disease progression will look like and how it will affect your life. However, along with following your treatment plan, there are various ways to manage the symptoms to improve your quality of life. It helps to educate your family and friends, colleagues, and others in your social circle about your condition and how serious the disease can be to help get rid of the stigma associated with skin conditions like hidradenitis suppurativa.(7)

Here are some answers and tips on how you can live your life with hidradenitis suppurativa.

How to live with Hidradenitis Suppurativa?

Remember that it’s not your fault

One of the most important things to remember is that nothing you have done caused hidradenitis suppurativa. Hidradenitis suppurativa does not happen due to your weight or poor hygiene. A person with perfect hygiene can still go on to develop this condition. Most medical experts and researchers believe there is a genetic component to who develops hidradenitis suppurativa. Research has found that a family history of hidradenitis suppurativa is reported in nearly one-third of patients. Looking at the inheritance pattern, it is believed that a single gene disorder inherited as an autosomal dominant trait causes hidradenitis suppurativa.(8)

Some doctors believe that hidradenitis suppurativa develops when hair follicles of the skin get blocked. Some experts also think it can be connected to hormonal imbalance or due to problems with the immune system. Excess weight, smoking and metabolic syndrome are thought to be potential risk factors, but more research needs to be done to firmly establish the exact risk of who develops hidradenitis suppurativa and why others do not.(9,10)

Hidradenitis suppurativa is also not caused by an infection. It is possible for a person of any weight can get this disease. However, in people who are overweight or obese, hidradenitis suppurativa can cause pain because many parts of the body are touching at all times, such as the underarms, thighs, and buttocks.

The Pain Associated with Hidradenitis Suppurativa Can Be Unbearable

When you have hidradenitis suppurativa, you will be living in pain, that too a lot of pain. Pain caused by hidradenitis suppurativa tends to be sharp and searing, and it feels like someone has stuck a hot fireplace poker into your insides. This type of pain may make you cry out in surprise at the intensity. It can also make it impossible to walk, sit, or reach for something. This, of course, makes it even more challenging to complete your daily chores, and many people even stop leaving the house to avoid feeling the pain.

Your doctor will be able to prescribe pain relievers and other medications to help you manage the pain and intensity of your symptoms.(11,12)

You Are Likely To Be Misdiagnosed

Perhaps the most frustrating part of living with hidradenitis suppurativa is that it is often misdiagnosed. Research into hidradenitis suppurativa is relatively new, and since not much is known about the condition, it tends to be frequently misdiagnosed. This can be frustrating for someone living with this disease as they go from one doctor to another in hopes of finding a solution and get relief from their symptoms.

If you suspect you may have hidradenitis suppurativa or someone in your family already has this condition, it is important then that you find a dermatologist or rheumatologist who is already familiar with hidradenitis suppurativa. Doctors who are not familiar with this disease may misdiagnose hidradenitis suppurativa as ingrown hairs, recurrent boils, acne, or just chalk it up to poor hygiene.(13,14)

If you are unsure about whether you have hidradenitis suppurativa, many people with the condition have said that one of the earliest signs of the disease they observed was blackheads that eventually developed into painful nodules. These blackheads can develop on any part of the body where the skin touches against each other, such as the thighs, under the breasts, buttocks, or armpits.

The Mental And Psychosocial Impact of Hidradenitis Suppurativa Is Just As Harmful

Hidradenitis suppurativa also has a mental and emotional effect on a person. Many people with hidradenitis suppurativa face various mental health issues like anxiety, depression, and low self-esteem. The stigma associated with skin conditions like hidradenitis suppurativa often makes people feel ashamed of their bodies. Many people with hidradenitis suppurativa find it easier to simply isolate themselves at home than go out in public and face the scrutiny of strangers.

People with hidradenitis suppurativa often report feelings of low self-worth and depression. Most of their time goes by adapting to their life with this disease as people start changing their clothing choices and start adopting regimented hygiene routines to prevent aggravation of the disease. People with hidradenitis suppurativa also experience restrictions in completing their daily tasks due to the sharp and searing pain associated with the inflamed lesions caused by this condition. Purulent and foul-smelling discharge at the affected sites of the body may further trigger embarrassment, isolation, and self-consciousness.

A study assessing the prevalence of depression in patients with hidradenitis suppurativa found that 38.6 percent of patients had depression.(15,16)

Hidradenitis suppurativa can also have a huge impact on your social interactions and overall quality of life. Depressed mood, embarrassment, irritability, fear of social stigmatization, and even sexual distress are found to be prevalent in people with hidradenitis suppurativa, thus reducing their quality of life.(17)

There Is No Cure For Hidradenitis Suppurativa

One of the most difficult things to accept when you are living with hidradenitis suppurativa is that it is a lifelong disease, and there is no cure for this condition. However, the treatment options for hidradenitis suppurativa are continuing to evolve to meet the needs of patients and helps them manage the painful symptoms of hidradenitis suppurativa. Remember that the earlier you get a diagnosis and start treatment, the better will be your chances of having a better quality of life.

It is essential that you follow the doctor’s prescribed treatment and take your medications timely to keep your condition under control.

Conclusion

Living with hidradenitis suppurativa can be a challenging and scary experiencing. However, with proper and early treatment and a strong support system, it is possible for you to live a full and happy life. Remember that you are not alone in this situation. There is a large hidradenitis suppurativa community that is welcoming. Being a part of a hidradenitis suppurativa support group can help you get through a rough time.

Educating yourself and your friends and family can help bring down the stigma surrounding hidradenitis suppurativa. Raising awareness about the condition will increase people’s understanding of this disease and help patients deal with the psychosocial impact of this disease.

References:

  1. Jemec, G.B., 2012. Hidradenitis suppurativa. New England Journal of Medicine, 366(2), pp.158-164.
  2. Revuz, J., 2009. Hidradenitis suppurativa. Journal of the European Academy of Dermatology and Venereology, 23(9), pp.985-998.
  3. Alikhan, A., Sayed, C., Alavi, A., Alhusayen, R., Brassard, A., Burkhart, C., Crowell, K., Eisen, D.B., Gottlieb, A.B., Hamzavi, I. and Hazen, P.G., 2019. North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part I: Diagnosis, evaluation, and the use of complementary and procedural management. Journal of the American Academy of Dermatology, 81(1), pp.76-90.
  4. Jansen, T. and Plewig, G., 1998. Acne inversa. International journal of dermatology, 37(2), pp.96-100.
  5. Jansen, T., Altmeyer, P. and Plewig, G., 2001. Acne inversa (alias hidradenitis suppurativa). Journal of the European Academy of Dermatology and Venereology, 15(6), pp.532-540.
  6. Alikhan, A., Lynch, P.J. and Eisen, D.B., 2009. Hidradenitis suppurativa: a comprehensive review. Journal of the American Academy of Dermatology, 60(4), pp.539-561.
  7. Slade, D.E.M., Powell, B.W. and Mortimer, P.S., 2003. Hidradenitis suppurativa: pathogenesis and management. British journal of plastic surgery, 56(5), pp.451-461.
  8. Ingram, J.R., 2016. The genetics of hidradenitis suppurativa. Dermatologic clinics, 34(1), pp.23-28.
  9. Lukach, A.J., Saul, M.I., Ferris, L.K. and Swoger, J.M., 2018. Risk factors for hidradenitis suppurativa in patients with inflammatory bowel disease. Digestive diseases and sciences, 63(3), pp.755-760.
  10. Schmitt, J.V., Bombonatto, G., Martin, M. and Miot, H.A., 2012. Risk factors for hidradenitis suppurativa: a pilot study. Anais brasileiros de dermatologia, 87(6), pp.936-938.
  11. Horváth, B., Janse, I.C. and Sibbald, G.R., 2015. Pain management in patients with hidradenitis suppurativa. Journal of the American Academy of Dermatology, 73(5), pp.S47-S51.
  12. Nielsen, R.M., Lindsø Andersen, P., Sigsgaard, V., Theut Riis, P. and Jemec, G.B., 2020. Pain perception in patients with hidradenitis suppurativa. British Journal of Dermatology, 182(1), pp.166-174.
  13. Loget, J., Saint-Martin, C., Guillem, P., Kanagaratnam, L., Becherel, P.A., Nassif, A., Fougerousse, A.C., Siham, M., Girard, C., Barthelemy, H. and Chaby, G., 2018, May. Misdiagnosis of hidradenitis suppurativa continues to be a major issue. The R-ENS Verneuil study. In Annales de dermatologie et de venereologie (Vol. 145, No. 5, pp. 331-338).
  14. Wang, S.C., Wang, S.C., Sibbald, R.G., Alhusayen, R., Bashash, M. and Alavi, A., 2015. Hidradenitis suppurativa: A frequently missed diagnosis, Part 1: A review of pathogenesis, associations, and clinical features. Advances in Skin & Wound Care, 28(7), pp.325-332.
  15. Kurek, A., Johanne Peters, E.M., Sabat, R., Sterry, W. and Schneider‐Burrus, S., 2013. Depression is a frequent co‐morbidity in patients with acne inversa. JDDG: Journal der Deutschen Dermatologischen Gesellschaft, 11(8), pp.743-749.
  16. Onderdijk, A.J., Van der Zee, H.H., Esmann, S., Lophaven, S., Dufour, D.N., Jemec, G.B.E. and Boer, J., 2013. Depression in patients with hidradenitis suppurativa. Journal of the European Academy of Dermatology and Venereology, 27(4), pp.473-478.
  17. ESMANN, S. and JEMEC, G.B., 2011. Psychosocial Impact of Hidradenitis Suppurativa: A Qualitative Study. Acta dermato-venereologica, 91(3), pp.328-332.

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