Although Hidradenitis Suppurativa (HS) affects at least 1% of the general population it is still mistaken for a rare disease. Here are 12 things that you may not have known about HS.
1. The extent of the side effects of the medication
Some medications that HS patients may be on can have side effects including mood changes, restlessness and inability to sleep.
2. HS can limit your mobility
Having HS in places like the axilla or groin can make basic everyday movements such as walking or picking something up extremely difficult. Not only can these movements cause pain as skin rubbing against the lesions can be very sore, but they also may erupt causing leakages or an unpleasant smell.
3. HS can affect any body part
If you have seen any videos or infographics about hidradenitis suppurativa (HS) then you will know that the most commonly affected areas are the armpit, groin, buttock, thighs and under the breast. But did you know that HS can affect other body parts too? It’s possible for the disease to occur on the back, face, neck and ear as well as arms and legs too.
4. Children can develop Hidradenitis Suppurativa (HS)
Those same videos and infographics usually state that HS usually develops during or after puberty too. This is true for the most part, but the disease can also present during childhood and occur later in life too.
5. Managing HS Wounds Can Be Very Difficult
Regular dressings can be hard to keep in place, and so they often leak, move of even fall off. On top of that, the adhesive from the dressings can damage the surrounding skin and make it all the more painful. Dressings can take a lot of time and sometimes, it’s hard to do a dressing change in work, or in school, or even our socialising. Our founder Suzanne has been living with HS for over 20 years and created HidraWear to tackle all of these issues, making HS wound care quick and easy! You can read more about HidraWear here.
6. HS can cause fatigue
7. Normal tasks can become strenuous
Tasks that most people wouldn’t think twice about such as getting your hair cut or going for beauty treatments can be stressful for people living with HS. HS can cause lesions and scarring on the scalp, neck, chest, ears and face and often patients will be embarrassed to let anyone see or touch them. Most hairdressers and beauticians will have seen lots of skin conditions and don’t even notice. If they do, they are usually understanding and try to make sure that you are comfortable.
8. Sitting in one seat for too long can be uncomfortable.
Another everyday activity that can be difficult for people with HS is sitting. Be it at work, in college, on the bus, in a car, on an airplane, or out for dinner – prolonged sitting can be very uncomfortable and even painful for people with HS.
9. It may not be just Hidradenitis Suppurativa
Some HS patients also suffer from other inflammatory diseases such as Crohn’s Disease or diabetes.
10. Shopping for occasion wear is hard
Comfy clothes are HS patients’ best friend. But you can’t wear your favourite tracksuit for a family wedding. Shopping for outfits for weddings, and special occasions can be very hard. Not only do you have to select something that is comfortable, but it will also have to hide your bandages and dressings, and make sure that they will not leak.
HidraWear is an extremely discreet way to dress your wounds. It’s not bulky and can be worn under many garments undetected. The dressings are highly abosrbent too so your lovely outfit won’t get destroyed.
11. Different treatments work for different people
The doctors aren’t completely sure what causes HS and there are several different theories. That is why treating HS is so difficult. Doctors have recently developed treatment guidelines for Hidradenitis Suppurativa, which outlines the different medications and approaches they can suggest to patients. Some medications help some people so they are prescribed widely with the hope that they will work for each individual. Sadly, sometimes these same medications have no effect, so the doctor will ask you to try the next treatment option. It is very frustrating for patients who want to get some relief from their symptoms. It is equally frustrating for health care providers who want to help patients feel better.
12. Doctors and researchers are really trying to solve the puzzle.
Every year, doctors and researchers from all over the world gather at two HS specific scientific symposia, to present and discuss their research findings and progress. One is in North America and one is in Europe. There are hundreds of doctors who attend these events and they are trying as best as they can to get to the bottom of HS and find a cure.
Did you know all these facts? Let us know which ones you knew about and what is new information to you.
When learning about Hidradenitis Suppurativa what was it that shocked you the most? What do you wish people knew more about when it comes to HS? Let us know on our social media accounts or email us at firstname.lastname@example.org.