About Vulvar Lichen Sclerosus Vulvae
The disease that could affect nearly 100,000 women in Spain.
To date, many of them have not been properly diagnosed.
What is Vulvar Lichen Sclerosus?
Vulvar lichen sclerosus is a chronic inflammatory disease affecting the anal and genital area.
What causes Vulvar Lichen Sclerosus?
The cause of lichen sclerosus vulvae is unknown and is probably due to many factors (multifactorial). The percentage increases when there is a family history and autoimmune diseases, especially thyroid diseases.
I did not know about Vulvar Lichen Sclerosus.
Is it frequent?
It is a “shameful” disease, that is, patients are ashamed to talk about it.
The disease affects 1 in 300 to 1,000 adult women. adult women and although it is approximately 6 to 10 times more frequent in women, it can also affect men.
The Bleeker study (2016) estimated that the incidence increased from 7.4 to 14.6 cases per 100,000 women and year from 1991 to 2011.
This increase could be due to a greater awareness of the disease and therefore a higher number of biopsies and diagnoses.
What are the symptoms and signs of Vulvar Lichen Sclerosus?
Vulvar Lichen Sclerosus Symptoms
Pain
Pain and burning from cracks and fissures that occur in the genital and anal area.
Itching
Continuous itching in the anal and genital area that interferes with daily life and even interrupts sleep.
Dyspareunia
Pain during sexual intercourse. This pain can become disabling.
Chronic Itching
Patients would be willing to shorten their life expectancy
11 years
If they could make it go away*.
*According to the study by Suephy C. Chen, MD, Pruritus. Dermatologic Clinics. April (2012)
Signs of Vulvar Lichen Sclerosus
Ablation
The labia majora and labia minora disappear.
Narrowing of the introitus
Closure of the vagina.
Clitoral phimosis
Burial of the clitoris under a sclerotic and scarred skin.
Bleeding
Erosions, cracks, scratches, etc.
Vulvar Cancer
Among untreated patients with lichen sclerosus vulvae
6%
will develop vulvar cancer*.
*According to Micheletti L. “Vulvar Lichen Sclerosus and Neoplastic Transformation: A Retrospective Study of 976 Cases”. J Low Genit Tract Dis (2016).
Liquenia Treatment
In 2017 the Dr. Gutiérrez Ontalvilla (MD PhD) launched the LIQUENIA clinical trial at the IIS (Instituto de Investigación Sanitaria) of the Hospital Universitario y Polécnico La Fe (Instituto de Investigación Sanitaria) of the Hospital Universitario y Politécnico La Fe (Valencia, Spain).
In the LIQUENIA Clinical Trial a group of patients diagnosed with moderate-severe vulvar lichen sclerosus sclerosus who had not responded to first-line treatment (ultra-potent corticosteroid cream) were infiltrated with fat tissue (fat-derived stem cells) and their own platelet-rich plasma.
The results obtained in this group of patients (treatment group) were compared with another group of patients with the same characteristics but who were only treated with corticosteroid cream (control group).
This research work was the basis for the doctoral thesis: Treatment of vulvar lichen sclerosus using adipose tissue associated with autologous platelet-rich plasma.
Liquenia Treatment Results
in patients with moderate-severe vulvar lichen sclerosus sclerosus
Improvement of itching only one month after the first infiltration.
Significant improvement of pain and burning.
Significant improvement in quality of life.
Significant improvement of sexual function.
Improved lubrication.
There was no outbreak of the disease (vulvar lichen sclerosus) in the treatment group.
There were no adverse events related to the LIQUENIA treatment.
In February 2021 the
Nixarian Foundation
Purposes
The aims of the Nixarian Foundation are the following research of Vulvar Lichen Sclerosus disease and other vulvar analogous pathologies, the dissemination of these diseases and facilitate the best available treatment available to affected patients.
Research
To continue research on vulvar lichen sclerosus disease and other similar vulvar pathologies in order to seek as early a diagnosis as possible. possible.
Disclose
Dissemination and dissemination of these diseases to social, medical, administrative and political visibility.
To build bridges between the public administration, associations of affected people and companies that share the interests of the Nixarian Foundation.
Creation of forums, informative talks, lectures, workshops, debates, etc.
Facilitate the best treatment
In order to bring to the affected patients an improvement in their quality of life, sexual function, signs and symptoms characteristic of these diseases.
Collaborators
We are looking for companies committed to women.
Companies with a code of ethics that encourages them to give back to society through a Corporate Social Responsibility program that emphasizes values that are aligned with our own.
Companies and entrepreneurs who understand that the way to make a better society is to promote research and dissemination; and that the fruit of these is to be able to help more and better women affected by these diseases.
