Blockages prevent arrival of nutrition that keeps young woman alive with rare disease

Fernanda Martinez is 24 years old and suffers from a rare condition, Ehlers-Danlos syndrome.

To stay alive, Fernanda, who has been creating content on the internet about rare diseases for three years, needs parenteral nutrition, which is administered intravenously.

But with the blockades caused by Bolsonar protesters since Sunday (30), when Luiz Inácio Lula da Silva (PT) won the elections in the second round, food may not reach the city where she lives, Florianópolis, in Santa Catarina.

“In general, the condition makes joints, skin, blood vessels and organs more fragile. Each patient is affected in different ways and intensities. In my case, in addition to the most common symptoms, I developed a series of complications in the gastrointestinal tract. , my stomach and intestines can no longer digest and absorb enough nutrients to keep me alive,” she says.

Over the years, Fernanda had more and more difficulty in eating through her mouth, and despite trying different treatments, she became severely malnourished.

The paralysis of the digestive tract, which affects Fernanda, happens when the movement of food that is in the stomach slows down or stops, preventing it from reaching the intestine.

“And the intestine is the main responsible for the absorption of nutrients, which means that these patients do not get the necessary amount of nutrients and often end up malnourished”, explains Cynara Oliveira, Nutritionist and Nutrition Supervisor at Hospital Santa Lúcia, in Brasília, which does not follow the case of Fernanda.

“I started to feed through a tube directly into the intestine and was stable for about a year, when the complications developed again. Since then, I have been on parenteral nutrition, administered through a catheter in the chest, in one of the veins that reach the heart. . As it is direct in the vein, it does not depend on the functioning of the gastrointestinal tract.”

The lack of parenteral nutrition for Fernanda

“In Santa Catarina we don’t have laboratories that handle this type of nutrition, that’s why he comes from Curitiba every day. They have a short shelf life, I only receive what I need for one day, every day. drink water in other ways, not receiving it is like fasting.”

With the blockade of several stretches of highways, Fernanda was left without a delivery date.

“Although the laboratory is in direct contact with the PRF and is transporting not only my nutrition, but also to other hospitals across the state, in many parts it is not possible to pass”, he says.

In these 3 years that she has received parenteral nutrition, the content creator says that she has already been through situations such as demonstrations, accidents and works on the Curitiba-Florianópolis route, but says that transport has always been able to pass.

“There are some standard parenteral nutrition formulas that have a longer shelf life and can be purchased here, I even used them for a while. However, it doesn’t fully meet my nutritional needs and some components tend to overload my liver. B’, for just a day or two.”

‘Anguish and helplessness’

“There remains the feeling of anguish and impotence for depending on a service that can be easily harmed, for not knowing when or if it will arrive and for not being able to do much about it”, says Fernanda.

She says that her mother is by her side at all times and that her home care team, doctors and nurses are also providing all possible assistance. “The lab that is in contact with PRF gives us news about the transport several times a day,” she adds.

In her view, demonstrations are “a right”, but they could be better organized and monitored so that they do not interfere with the rights and freedom of others.

“Talking openly about it is also extremely important so that more people can understand what happens in situations like this and how easily we, who have a health condition, can be affected and forgotten in the midst of it all.”

This text was originally published here.