ORIGIN STORY – VANESSA

my name is Vanessa la Verneuillette and I’m a 37-year-old woman from Paris, France. This is my HS Origin Story.

I was diagnosed with HS when I was fifteen after years of pain and suffering. I was being monitored for Crohn’s and my Gastroenterologist referred me to a Dermatologist who was finally able to figure out what I had. They had to operate on me urgently for an abscess and it was then that I was officially diagnosed. My first reaction was despair, anguish and stress because it was an unknown disease for my family and I. It took a long time for me to accept that I was sick. I even had to undergo therapy to accept this disease. Today, I’m at a point where I am in complete acceptance of it. 

HS has three stages of severity and I have Stage 2. Along with HS I also have Crohn’s Disease, Ankylosing Spondylitis and Infertility from medications for my Crohn’s disease. For years I refused treatment because I did not accept being sick. I only had surgery when I was left with no other choice because the abscesses were too big. Although I am very well followed for my other illnesses, HS was very difficult to deal with psychologically. Recently, after trying all the anti-TNF treatments for my Crohn’s disease (which did not work) I ended up taking Bactrim 800 antibiotics and being operated on whenever abscesses appeared.

HS has impacted different areas of my life. First of all, I was put on total disability three years ago because of HS and I’m only 37-years-old. It was very difficult for me to accept for at least a year. I was very depressed, as not working can hold many different consequences: financial, friends, societal. My new personal life was very hard to accept because illness can often be scary for others. I lost a lot of friends (well, I thought they were friends at the time). In addition, our financial income was divided in half because I lost most of my salary and my financial life was turned upside down. My husband and I had bought a house, but since we could not pay for it we had to sell it.

Fortunately, there are not only negative sides to having HS, there are also positives. After a long time in therapy and a real questioning of myself, I learned to open up to others to talk about this disease. Because of this, I decided to take care of other patients who have the same conditions that I do. I created an Instagram account to give tips for better living with the disease on a daily basis. If you would like to follow me on my Instagram account for fun and information, here is the link:  https://www.instagram.com/p/CFWp9RcqSA3/?igshid=153agv3w469as

I contacted the AFRH (Association Française de Recherche pour l’Hidrosadenite/French Research Association for Hidradenitis)to become an Ambassador for the Paris region in France. My role as an AFRH Ambassador is to support patients in their search for treatments or for doctors specializing in the disease, and to support them morally if necessary because unfortunately, many patients do not dare talk about HS to their friends or families. I try as much as possible to play down the situation to help them stay positive and to give them as many tips as possible to better cope with the disease. I also guide them as best as I can in their administrative procedures so that the disease is recognized.

It is very important for me to be able to help others on a daily basis because I do not want them to go through the same things that I went through years ago. I myself have undergone more than three hundred [300] operations related to my HS. I do not want others to shut themselves up in their pain and their anxieties and that is why I share my testimony, tips, and everything that revolves around the disease as much as I truly can. I also became the Admin of a group for HS in France on Facebook. It allows me to help others as well and we are able to come together to share our experiences and struggles as we face our pain and illness. On the Facebook group, I share a lot of articles and tips for people who are sick and suffering from disease in general. You can visit the page here: VanessaLaVerneuilletteFacebook 

One of my most positive experiences that has come from having HS is being able to meet a lot of other people who have this disease. It has allowed me to make new acquaintances, develop my status as an artist, and to write articles and meet experienced doctors. It has also allowed me to pursue some of my other passions.

Besides my roles in the HS community, I have many hobbies including one in particular: knitting. For many years, I have been knitting layettes for children, sweaters for adults and accessories for everyone. It allows me to relax and to calm my joint pain. I decided to learn how to knit at a time when I was very depressed, and it truly has helped me a lot.

A tip I use to manage my HS is Tea Tree essential oil because it can break abscesses when they don’t open on their own. It must be mixed with a fatty cream such as petroleum jelly or Mupiderm antibiotic cream and applied to the abscess with a hot compress. You then take a hot water bottle, because the heat is very important, and you apply to the compress the Tea Tree oil. In my experience, within twenty-four hours, the abscess will open by itself.

I would tell fellow HS Heroes who were struggling or newly diagnosed patients that they are not alone! We are a tight-knit community and you must ask all the questions you have. I am there for you in case you need help. Above all, we must make our disease better known to try to advance research. 

I hid my illness from my family and friends for years, but because I was not well, one day I decided to talk about it. The reactions were difficult for me to process because either they perceived it as little pimples or they thought that the pain was minimal. Some would say that because it is not visible, HS does not exist. Whether it’s my family or my friends, even though they’re close to me they don’t understand how hard it can be. 

The only person who really understands me is my husband because he lives the disease with me on a daily basis. He gives me my bandages, accompanies me for hospitalizations and operations. I’d say he is my Hero because it is with thanks to him that I can cope with the disease. He helps me in all my everyday activities even when I’m in a bad mood and he supports me when I’m depressed. He looks at me with love every morning, and that’s how I manage to move forward. In addition, helping other patients makes it possible for me to find purpose in my own situation and allows me to move forward on a daily basis to support others. I would say my husband is my Hero… but I am also my own Heroine.