Registry: “I have the responsibility to live my life to the fullest”

As soon as Emmanuelle was born, doctors noticed a problem: she had a heart murmur and visible signs of respiratory failure. “My parents quickly consulted a cardiologist. He explained to them that it was not a heart murmur, but tetralogy of Fallot, a congenital heart defect, and that they had to operate quickly, because I would not be able to survive like this”explains the young woman.

Very little Emmanuelle presented a somewhat unusual form of the most common congenital heart disease: she had a ventricular septal defect and her left lung was not connected to the heart, because she was missing part of the trunk of the left pulmonary artery. “I learned much later that my pathology was linked to a rare genetic disease called DiGorge syndrome, also called 22Q11 because it is a deletion of chromosome 22“, adds Emmanuelle.

Several operations were performed during his childhood to repair his failing heart system, until the only option to save his life was a transplant.

Registry: “the pain still affects me today”

In 1992, when she was 9 years old, doctors decided to put her on the transplant waiting list because she needed‘a part of the pulmonary trunk, of a complete pulmonary artery and an inter-ventricular communication to continue living.

“The human transplant that I received was the third operation that I had undergone. At the beginning, they patched it up as best they could. They “did some plumbing” as Professor Francine Leca, the first female cardiac surgeon and pioneer of cardiac surgery, said. discipline in pediatrics, who operated on me”remembers Emmanuelle. “In the 80s,It was only the beginning of heart transplants on children and they were not yet operating on newborns.. The goal was to keep us going long enough to be able to give ourselves this opportunity.”

Waiting list, transplant, grafts, operation, open heart surgery… As a child, Emmanuelle did not perceive all the risks or implications of her situation. “As an adult, we realize that our survival involves the death of a person. As a child, not really. We are prepared by the doctors, and especially the parents, for the operation, to be intubated, to the pain and above all we see that ‘we will be able to do things that are impossible for us, like running in the schoolyard with our friends.’she explains.

It’s up to him “9 and three quarters years” that the long-awaited ringing sounded. And Emmanuelle had been very well prepared by the medical team and her parents. She had no apprehension at the time of the transplant, nor even when she woke up or during her 3 days in intensive care. It was finally during her post-surgery hospitalization that she faced a major difficulty: pain.

“This still impacts me today. In the 90s, pain management and care were not the same as now, especially in children. This is no longer the case today. Today fortunately. But at the time pain was not really taken into account during care, even if the team was caring”explains the young woman.

This evocation also brings back a memory: “My veins were so pitted that the nurses were no longer able to give me injections. It was then decided to give it arterially. Here too, they had to try again several times. The team was forced to do to take my mother out, because I was screaming to death because of the pain. It’s a bit traumatic, even more so than other elements that could have been significant, like waking up and being intubated.”

Registry: “I have a responsibility: to live my life to the fullest”

Fortunately, the children recover very quickly. Fifteen days after her transplant, Emmanuelle was able to return home… and after a period of convalescence at home well surrounded by her family, she was able to live her life to the fullest, without the hindrance of the disease, regular follow-up to monitor is now sufficient.

“Before, I couldn’t run at recess, I couldn’t bungee jump like my friends, nor go to the gym. I couldn’t walk home even though at 9 years old my friends started to be authorized to do so. All these little everyday things were inaccessible to me because of the illness. The transplant revolutionized all that.” she remembers.

“You discover that you can breathe, that you can run across the yard without being out of breath. I was able to travel thanks to this transplant. In fact, you simply begin to live.”

And if little Emmanuelle, “9 and three quarters years old,” had not necessarily become fully aware of the implications of the transplant, her donor and those close to her quickly accompanied her thoughts as she grew up.

“Receiving this transplant took me from the carefree childhood to an awareness that I had a responsibility to live my life to the fullest and not do anything. A way to honor and say thank you to the parents of this young deceased teenager who allowed me to live thanks to this organ donation.”

In 2012, doctors told Emmanuelle that she was going to need a new transplant. “I was thirty years old and planning to become pregnant so it wasn’t necessarily easy to hear.” But ultimately, they suggested that he integrate a less invasive experimental protocol that could avoid a new open heart intervention.

“This relied on the installation of a valve through a catheter operation. The doctors said it would last 5 years. I’m 11 years old today. And, I plan to continue to enjoy it“.

Chronic illness and employment: “it was difficult to talk to my employers”

And if the transplant allows Emmanuelle to fully enjoy life, arriving on the job market was not easy.

“Cardiac monitoring, when you are a child or teenager, is not very problematic. We miss classes, but it is possible to make up for them. In the world of work, it has been much more difficultdifficult to talk about it to my employers who were not aware of and trained in this issue. There could sometimes be more medical appointments due to follow-up and fatigue. This was not always well understood by the company.”

After several professional experiences in a company, the holder of a Master 1 in human resources finds her way after a skills assessment: becoming a disability referent independent. “This is the person who supports company management in the implementation of disability policies to develop the inclusion of people with disabilities within society”explains Emmanuelle.

During its DU “disability representative private sector, public functions, associative sector” of the University of Paris Est Créteilshe meets Magali Barthèremother of a child with multiple disabilities who also encountered difficulties during school inclusion. “The twists and turns of his son’s life journey and mine echoed and united us on the idea of ​​wanting to undertake things together to move the lines.”

Independent disability representative: “I help to move the lines”

Together, they made an observation: since 2020, companies with more than 250 employees must have a disability representative. However, access to the world of work has not really improved for chronically ill people or workers with disabilities. And for good reason, the appointed employee is often not or poorly trained in this profession and all of its specificities. “Moreover, SMEs which do not have this obligation must also have 6% of workers with disabilities, but they do not necessarily know how to go about meeting their needs or recruiting them.”

To help meet these needs, the two women founded together Cap & Pro Francea network bringing together independent disability representatives. “This umbrella structure makes it possible to pool technical and communication resources for independent disability representatives. It is an association so it does not have a profit motive. There were beginnings before covid, but our network was truly born in 2021.”

His goal ? Support and advise companies on the implementation and monitoring of their disability policy as part of their CSR. Eager to promote inclusion in the world of work, the two co-founders have also developed a training component allowing communication and discussion on the subject of disability within the company or other structures such as schools or institutions. . “We also offer support for professional projects. We help people with disabilities to adapt their project according to their health constraints, but also their capacity: that is to say their ability to do things, but also to be able to act.”

And for Emmanuelle, it is in the recognition of the “capability” of the 12 million people with disabilities that France will truly become inclusive.

“Yes, we have health problems, we can be in handicap situations depending on the environment in which we operate, but we have skills and we are able to workto provide expertise or innovative solutions”. Emmanuelle is a good example of this.

“I am now fully aligned with my professional life. My project makes sense: I have linked my professional journey to my history. I am helping to move the lines on the subject of the inclusion of people with disabilities. It’s a real fulfillment.”