Eau Thermale Avène is keen to get involved with patient associations and forge partnerships to support them. One of the strongest of these is a partnership forged in 2007 to support people with ichthyosis. Joint examination of this rare and disabling genetic disease with Anne Audouze, president of the Association Ichtyose France (AIF) and Marie-Ange Martincic, director of Les Thermes d’Avène.
First things first, what is ichthyosis?
Anne Audouze: There are several forms of it, but generally it presents itself as very dry, highly inflammatory and tight skin. Patients often suffer from hyperkeratosis or cracked skin, they do not sweat and therefore do not cope well with dry cold, heat, or temperature variations. It is difficult for them to take part in sporting activities and work in overheated spaces. This results in physical, aesthetic, and also psychological discomfort. Patients tend to become withdrawn.
Marie-Ange Martincic: This skin condition has always moved me because it is extremely rare: it affects only one to two people in 500,000 in Canada. And because it is quite visible, it attracts the eyes and questions of others. The patients who suffer in addition to being misunderstood touch me.
We want to make our therapies enjoyable as well as being effective and rigorous. This is important when you have sore skin.
Marie-Ange Martincic
How did your partnership come about?
It was an encounter. The President of the AIF of the time, Marie-Cécile Verly, suffered quite severely from ichthyosis and came to Avène. The thermal treatment did her a lot of good.
M-A.M: She asked to take part in the Entretiens d’Avène1. In 2007, I introduced her to the brand manager at the time. As well as being funny and sociable, Marie-Cécile Verly was determined. The connections were gently woven. The event is a meeting in the form of a round table between experts on an important topic. Its purpose is to inform scientific and non-scientific communities about the latest advances in dermatology research.
1-The event is a round table meeting between experts on an important topic. Its purpose is to inform scientific and non-scientific communities about the latest advances in dermatology research.
We feel supported, it is truly irreplaceable.
Anne Audouze
What does this partnership mean for people with ichthyosis and their loved ones?
A.A.: Firstly, for us, we have been able to experience moral support and unwavering attention for years. It allows us to finance weekends at the hydrotherapy centre for families and, for four years, for parents without their children. These encounters allow patients to connect with each other, but also with caregivers, through the centre. We feel supported, it is truly irreplaceable. There are also many focuses: products made available (and skin suffering from ichthyosis goes through tubes and tubes), educational brochures, makeup artists during our youth weekends.
M-A.M: It’s an exchange. Thanks to the AIF we are promoting the thermal treatment and providing relief to more patients. In the early 90s, we only had one or two people a year with ichthyosis. These days, there are between 40 and 45 each year coming from around the world. I remember, among other things, the arrival of a little American girl suffering from ichthyosis with whom we then corresponded for a long time. A few years ago, the doctor who monitored her in the United States took advantage of a trip to France to pass through Avène. He saw such incredible results that he wanted to know what we had done for his patient. It was a powerful moment. And then, without the AIF, which helped us to recruit patients, we could never have set up the only study that exists today on the effects of thermal treatment on ichthyosis. This has allowed us to scientifically show the clinical and psychological benefits of a thermal treatment, even in the medium term.
2- In 2009, in collaboration with several university hospital centres, a study was carried out to assess the effects of the Avène thermal treatment on patients with ichthyosis. This study, published in the November 2011 issue of the British Journal of Dermatology (2011 165, pp1087–1094) highlights the value of the thermal treatment in Avène as a therapeutic approach.
After participating in the study, a patient wrote to me “ I can live. I can breathe through all the pores of my skin.
Marie-Ange Martincic
What are the benefits of the cure for people with ichthyosis?
M-A.M: After participating in the study, a patient wrote to me “ I can live. I can breathe through all the pores of my skin. I’ve never experienced what I’m feeling now – soft, manageable skin that doesn’t hurt... " It was her first treatment, she was 66 years old and regretted not having known about it before.
Anne Audouze: In fact, skin with ichthyosis can be very tough and cracked. Water and treatments make the skin supple and reduce inflammation. Here, patients relax and discover a treatment adapted to their symptoms, to comfort and improve the appearance of their skin. At last.
M-A.M: As we’ve gained experience, we have been able to develop particularly suitable treatments and equipment. Such as a scalp shower or pulsating bath jets that combine the mechanical effects of water with the properties of thermal spring water. Body wraps and hydrating facial treatments are also a key staple of the treatment programme. But we want to make our therapies enjoyable as well as being effective and rigorous. This is important when you have sore skin. Hence our treatment rooms open out to the outdoors and nature, there are games in the rest rooms, the creams are pleasant to apply. We have set up “ alternatives to scratching ” workshops, workshops that give children more independence with their treatments and activities for the rest of the family. This allows it to benefit everyone.
Here, patients relax and discover a treatment adapted to their symptoms, to comfort and improve the appearance of their skin. At last.
