Meanwhile,
Morges: fight dad against neurofibromatosis:
Rare disease
Emelyne’s dad’s fight against neurofibromatosis – Morges: fight dad against neurofibromatosis
The Morgian Marc Tissot travels Europe to raise awareness of the rare genetic disease suffered by his daughter. Nevertheless, A continuous commitment.
Posted today at 8:02 a.m.
Emelyne Tissot (in the center) suffers from a rare and unknown genetic disease, neurofibromatosis. Meanwhile, His parents. Meanwhile, Marc and Florence, founded the Roman mutual aid group for neurofibromatoses (Ger-NF) in order to raise awareness among the Swiss and European population.
Yvain Genevay / Tamedia
- Type 1 neurofibromatosis is a genetic disease that affects around 2000 people in Switzerland. In addition, causes benign tumors on nerves, with very variable symptoms from one patient to another.
- Diagnosed very young. In addition, Emelyne Tissot has undergone heavy surgical interventions, still bears the consequences of the disease and currently follows chemotherapy for a progressive brain tumor.
- President of the Roman mutual aid group for neurofibromatoses. Nevertheless, Marc Tissot is fighting to make the disease known to create a network in Europe.
The name is not simple, but the capital mission for Marc Tissot since it has imposed itself on its life. However, The Roman mutual aid group for neurofibromatoses (GER-NF) is above all his work. Therefore, with the tireless objective of raising public awareness of maladies rare genetics which mainly affect the nervous system and that it tries to make morges: fight dad against neurofibromatosis known wherever possible.
At the origin of this initiative. Similarly, Marc Tissot, president of the association and father of Emelyne, suffering of type 1 neurofibromatosis (NF1), the most common form of the disease. For example, In Switzerland, around 2,000 people live with this pathology, according to the estimates of the Ger-NF. Neurofibromatosis causes the formation of benign tumors on the nerves – neurofibromes – as well as other variable symptoms. making each case unique.
A daily fight – Morges: fight dad against neurofibromatosis
Marc Tissot discovered the disease seventeen years ago at the birth of Emelyne. “At six weeks old, her fibula was broken for no apparent reason. The bone was extremely weakened and did not regenerate, ”recalls the 62 -year -old Morgian. It was only four years later that an operation became possible.
In morges: fight dad against neurofibromatosis the meantime, Emelyne must wear splints, and surgery do not mark the end of Calvary. To promote bone growth, a device composed of steel stems crosses his leg for three months. “Every night, we got up to turn the screws to gradually lengthen the bone,” says his father.
Care is heavy. Every fifteen days. Emelyne must go to the hospital to clean the wound, and the pain remains lively in her memory. “I especially remember pain when I was torn from my skin,” she says. Even today, the young woman feels pain, especially when time is deteriorating, and she has trouble walking over long distances.
A fight on several fronts
The complications do not stop there. The body of Emelyne is covered with “coffee au lait” spots and fibroids that develop on its nerves. “Tumors morges: fight dad against neurofibromatosis can appear anywhere in the body, which makes each case unique,” explains Marc Tissot.
For more than a year, the young woman, now 17, has been following chemotherapy. A routine MRI – one of the three she spends each year – revealed that the brain tumor she. had for several years had developed in a disturbing manner. “At 300%,” said his father. It is a real shock when you are a parent. ” Since then, Emelyne has to go to the CHUV every week to receive a venous treatment and take antibiotics.
A commitment beyond borders
Since he resumed the presidency of the Ger-NF in 2017. Marc Tissot has made awareness of the disease his main mission. “For me, publicizing neurofibromatoses is more important than the frantic research of funding.”
For this, he did not hesitate to cross borders. He went to France, Belgium and even England to participate in specialized congresses, meet researchers, doctors and other associations. “The former presidents returned from these meetings by simply saying:” There is progress. ” But if it’s just to hear that, I can read it in the newspapers. So I wanted to go myself, ask questions, create concrete links. ” These exchanges have enabled the creation of an international register on neurofibromatoses in which a dozen countries are affiliated.
He who knows better than anyone the reality of these little -known diseases. hopes that his commitment will allow other families to feel less alone in the face of neurofibromatosis. Her daughter Emelyne keeps a smile. At the start of the school year in August, she will start training in multimedia. A course made possible by morges: fight dad against neurofibromatosis the institution of Lavigny.
What is neurofibromatoses?
Emelyne Tissot has a type 1 neurofibromatosis (NF). These are due to the congenital alteration of a gene on chromosome 17. would affect, according to the Ger-NF, one person in 3000. In addition to “milk coffee” and fibroid spots, these diseases also cause attention disorders. “In progress, it’s very complicated to stay focused,” says Emelyne Tissot.
The NF2 is rarer. is characterized by the almost systematic development of tumors located along the hearing nerves which can cause hearing disorders. It can also be associated with benign tumors compressing the spinal cord. which can cause walking disorders or weaknesses of the arms or legs. The Ger-NF indicates that a person in 35,000 has this disease.
“The Vaudois week”
Find most of the news of the canton of Vaud, every Friday in your mailbox.
Other newsletters
Did you find an error? Please report it to us.
Further reading: Very “worrying” situation: in Switzerland, criticism abound in front of American strikes – RTS.CH – Electric cars: Byd sets in the assault on French -speaking Switzerland – USA: Mahmoud Khalil freed from a federal detention center – Pedocrime is in the dead angle of Swiss banks – Jason Joseph equals his Swiss record.
