Being diagnosed with Hidradenitis Suppurativa can be a very scary thing. There isn’t a whole lot that people know about it which means a lot of the time, the important questions you have about the skin condition can remain unanswered.
The only thing scarier than being diagnosed yourself is your child be diagnosed with Hidradenitis Suppurativa.
Here are a few things you can do to help your child live with Hidradenitis Suppurativa:
Learn all you can about HS
As HS is not a very well-known disease, the chances are your child won’t have heard of it before being diagnosed. Or even if they have heard of it, now that they are diagnosed, they are sure to have a lot of questions. Learn what you can about the skin condition and be a source of knowledge for them. This will be a huge comfort to them to know that their parent has some of the answers for them.
We have loads of HS blogs that you can learn from to get you started.
Encourage them to research it
If you are the parent of a teenager, encourage them to research the condition and learn about it. Start by getting a list of good HS blogs/sources for them to read. Reading about HS themselves will show them that other people are living with it and manage it every day just like they do.
Some good sources that we would recommend are:
Shatece Haynes – Living with HS: Hidradenitis Suppurativa
Jackson Gillies – Bringing HS (Hidradenitis Suppurativa) Out of the Dark – TEDxSantaBarbara
Maggie McGill – Living with Hidradenitis Suppurativa
Help them to relieve discomfort
Some things you can do at home to help your child: :
- Apply warm compresses – This can help draw any abscesses to a head. Make sure they are not too hot though; you don’t want to further damage the skin.
- Run a warm bath (if you have a tub). Some people use Epsom salts or natural sea salt to help relieve symptoms.
- Soft furnishings – sometimes little things like sitting on a kitchen chair or a firm couch can be uncomfortable for someone with HS. Soft furnishings like cushions and blankets can help make sitting a little more comfortable.
- The worry over leaks and stains can be upsetting for your child. HS lesions drain quite a bit and may leak onto clothing, bedclothes and towels at home. This can be very stressful and embarrassing. Try to be understanding.
Seek medical care when necessary. If in doubt, get it checked.
- Follow medical instruction and ensure your child takes their medication as prescribed
Be an example for them to lead a healthy lifestyle
We all know maintaining a healthy diet and keeping fit is always a good lifestyle choice so it’s no surprise that it will help people with HS too. But instead of focusing solely on your affected child, get the whole family involved. Try going for family walks at the weekend or have healthy snacks around the house.
Try out a new form of exercise
Depending on when their HS has flared, some sports, perhaps ones they used to love might become more difficult. For example, if they are experiencing a flare-up on the thighs or groin, walking/running might become more painful. Encourage them to try yoga or Pilates, or to find another way to keep active.
It might seem obvious but make sure to constantly check in on them. If they haven’t spoken about their HS in a while this doesn’t mean they aren’t suffering. They might be afraid that they are boring you or complaining too much. HS can be very mentally draining as well as physically so make sure to check-in, so they know it’s okay to talk about it. It is important that your child is not hiding or minimizing symptoms. The sooner you know about their symptoms, the sooner you can help.
Buy them some new cool clothes
Everyone loves surprises, right? A present for the sake of a present will make them feel great. Your child may need some new clothes that are more comfortable to wear. Comfort is key. Choose soft breathable materials.
If you have any questions on HS feel free to contact us or check out our HidraWear HS Facebook Community. This community is a safe place for people living with HS or family of people living with HS to share experiences and tips for managing the condition.
Overall, remember you and your child are not alone and together you can overcome Hidradenitis Suppurativa.