Hidradenitis Suppurativa can affect people in many ways. No two diagnoses or treatments are the same. This is why it is very important for me to learn from others experiences with the condition. I talk to people who are living with Hidradenitis Suppurativa from all over the world through online support groups on social media. Reading about peoples life stories helps me to understand the condition better.
From all my reading, here are some of the key topics I want to share about HS. As reading about others helped me to understand HS more, I hope by writing this you too will discover something new.
1. Alternatives therapies may not work
Be careful when searching for natural approaches to help control HS on the internet. Although some therapies may help, I have found that others may worsen the condition or just be a waste a time – and maybe money. I tried an expensive treatment with ozone therapy for two months. The doctor introduced ozone (a natural gas composed of three oxygen atoms) in the bloodstream once a week and promised me that it would completely cease my inflamed boils. However, I had no improvements and was left feeling nothing but frustration.
On the other hand, there are success stories like Amanda Torre’s. She uses Chinese medicine and acupuncture to treat boils. Read more about it on her blog.
2. Do not be afraid to talk about it
Quite often, HS can take a while to be diagnosed. HS patients can be misdiagnosed numerous times before reaching a final diagnosis. Even after diagnosis, it may take years to start the right treatments that will work for you. As we mentioned above, HS can affect people in many ways. This is an extremely difficult process. It can be hugely frustrating to not understand what is happening with our own body.
Although many still haven’t heard of Hidradenitis Suppurativa, it is much more common than it seems. However, spreading awareness is still really important. To help spread awareness about HS, don’t be afraid to talk about it with others. It may help someone one day.
For example, if someone asks why I avoid certain foods that can be a trigger for me, I always explain HS to them. Sometimes they may not have known about HS or that I had it. Not only will this help spread awareness about HS but it will help people to better understand chronic and invisible illnesses.
3. There is no cure – But it can get mild
Through our life with HS, the severity of the condition may differ. As HS is related to unbalanced hormones – especially high levels of androgen – some women claim it disappears or becomes milder after menopause.
I tried three different birth controls with anti-androgenic effects before finding one I felt worked. In the beginning, I felt headaches and anxiety. A gynaecologist recommended trying each birth control for at least three months before concluding it was time to go for the next one. On my last attempt, my HS improved so much it started to get into remission.
Also, some people declare their HS gets better when they move out from hot climate sites as recurring sweating may worsen the condition.
4. Laser sessions can help
Hidradenitis Suppurativa is also related to hair follicles inflammation. According to Dr Luiza Keiko Oyafuso, there are some types of hair removal lasers that improve the condition and scars due to surgeries, like Nd Yap 1340nm, Nd Yag 30J and LightSheer.
So far, lasers are better than waxing methods for HS patients. Razors and depilatory wax may damage the already delicate skin and cause flare-ups.
5. You are what you eat (and so is your HS)
A balanced diet is not just good for your overall health, but it can help to prevent skin inflammation.
As mentioned before, unbalanced hormones can cause flare-ups. Dairy is one of the worst food groups for raising hormone levels and causing inflammation. For many patients, it is recommended to cut out milk and all other dairy products such as yoghurt, butter, cheeses etc.
According to members of the Facebook group The HS Diet Connection, some diets help them put HS under control like the Paleo diet and the Autoimmune Protocol (AIP) diet. For many of them, other foods such as gluten, yeast and sugar can cause a flare-up too.
On the other hand, they are some sort of foods (berries, olive oil, avocado, broccoli) or spices (turmeric powder, cinnamon, garlic) known to have an anti-inflammatory effect on our body.
Fernanda Almeida, 23 years-old, is a Brazilian journalist who moved to Ireland in 2019. She is passionate about coffee, photography and writing. She created a support WhatsApp Group for HS sufferers to spread information about the condition among Brazilians. She is currently based in Galway, where she works as a barista.