People affected by a rare and painful disease are facing many difficulties: they lack information, suffer from the lack of recognition of their pathology and the shortage of professionals, and they face the eyes of others and their own sense of guilt.
These patients are faced with terrible pain. They often feel misunderstood and find themselves in real distress. Corine Cliquet has undertaken a mission to accompany them and provide them with tools to combat pain by launching “Econsi Formations”, a specialist website about dealing with pain and complex regional pain syndrome (CRPS).
As well as this toolkit for patients, an e-learning experience has been created for therapists and healthcare professionals.
Pain in France, a public health issue
In France, chronic diseases are a major public health problem: they affect nearly one in five, and are one of the main causes of death and disability. Today, fourteen million patients suffer from chronic pain impairing their quality of life.
Chronic pain does not only impact on the individuals. It also has a significant cost to society, in terms of consultations and hospitalizations, work, and job losses.
The majority of patients feel that their pain is not sufficiently controlled. This is especially true for those who are suffering from a rare disease such as CRPS 1 and CRPS 2, two little-known pathologies and poorly supported in France.
A new approach to pain
Nurse training and herself affected by CRPS 2, Corine Cliquet decided to act.
“I realized, as a result of my experiences personal and feedback from many patients, our pain is not relieved with only one medicine, and we are neither listened to nor heard.”
She, therefore, teaches patients to ease the pain, by mixing “traditional” medicine with “complementary” medicine, aka “soft medicine”. An online space has been created where one can find the voice of the patients, their relatives, and of the small associations defending rare, painful or other pathologies.
“This way, the patient will become an active participant in his pathology and its pain”, explains Corine.
Make the patients active participants in their own healing
Corine Cliquet’s approach is innovative. According to her, the patient must realize that going towards forgiveness and healing belongs to him/her, and she/he cannot do unless she/he performs her/his part of the deal.
“I bear no judgment since my goal is to work with patients and heed their advice. And above all, to believe their pain level and understand them, being myself a chronic pain patient. “
A website to communicate on CRPS
Econsi Formations plans to become a reference point for information on CRPS, aimed at those affected, their families and also at health professionals. So that there will be a single portal in France, which brings together all organizations, associations, companies, health professionals and therapists dealing pain and rare diseases.
“I want to draw attention to CRPS: it has been talked about since the 16th century, but in the 21st century, nothing is being done for this rare disease. “
About Corine Cliquet
Corine Cliquet has been a nurse for over 20 years’ career and she well-knows pain. Following a meniscal dislocation of the knee and a sprained ankle with ligament rupture, she was attacked twice by CRPS 2. In 2012, she founded the Federation of Associations Thera Wanka, which aims to improve awareness of little-known pathology.
To better combat CRPS, Corine is involved in training: she won a degree in therapeutic patient education in 2015 and is a recognized expert patient on CRPS. She has also learned the EFT method, which allows an emotional release, and neurolinguistic programming. She has become a coach in helping CRPS patients achieve relationships, and is a trainer in CRPS and therapeutic patient education.
Corine’s fight also continues on the web, In 2017, she created the first directory that brings together agencies working in pain and rare diseases, as well as “Econsi Formations”, a site giving information on CRPS and pain. In the future, she would like to expand its training to include comorbidities and move from the status of an entrepreneur to a business, allowing it to offer more choices to patients and caregivers with the collaboration of other professionals.