In 2015, when she was barely 24 years old, the occupational safety technician Jocilene Emanuele Medina went to the emergency room in Pains, Minas Gerais, in Brazil, after an episode of vomiting, vertigo and imbalance.
After a medical consultation and some tests, Medina was referred to an otolaryngologist where she was diagnosed with labyrinthitis, an irritation and swelling of the inner ear that can cause vertigo and hearing loss.
Manu, as she is better known, followed the indicated treatment, but her symptoms did not improve and she began to lose vision in her left eye.
Concerned, she sought out an ophthalmologist. “The doctor noticed that she had inflammation of the optic nerve and decided to admit me immediately. She was scared. I did not imagine the seriousness of my case, ”she says.
In the 15 days of hospitalization and with several tests carried out, the doctors found no answer.
Only after a year and a half of research did he receive the diagnosis of multiple sclerosis.
“I was stunned. I believe that the initial phase of diagnosis is the most difficult for the patient. Having ‘easy’ access to information on the internet is even more desperate”, says Manu.
young patients
Multiple sclerosis is a neurological, chronic and autoimmune disease in which the body’s defense cells attack the central nervous system, damaging the brain and spinal cord.
May 30 is World Multiple Sclerosis Day, the date chosen to make this disease more known to society.
According to the British National Health Service, it is most commonly diagnosed in people in their 20s, 30s and 40s, although it can develop at any age. It is between two and three times more common in women than men.
The cause of the disease and why it is more common in young women remain open questions for science.
One theory is that hormonal fluctuations during the reproductive years could influence the immune response and increase the risk of developing the disease in women.
Other studies suggest that this increased susceptibility may be due to a genetic component.
In addition, women tend to generate a stronger immune response, which can contribute to greater inflammatory activity in the nervous system, increasing the risk of developing the disease.
far from dementia
Multiple sclerosis is not a type of dementia as some people mistakenly think.
According to Rodrigo Thomaz, neurologist and medical coordinator of the Center of Excellence in Multiple Sclerosis at the Israeli Hospital Albert Einstein, the word “sclerosis” refers to the “hardening” that occurs in the brain and spinal cord of patients.
“It is possible to observe the formation of small plaques with scars that harden to the touch.”
Multiple sclerosis is characterized by neurological impairment. In those affected, the immune cells begin to attack instead of protecting the immune system, causing inflammation.
These affect the myelin sheath, a kind of protective cover that covers the neurons responsible for carrying impulses from the central nervous system to the body and vice versa, causing the functions coordinated by the brain to be compromised.
In addition to the specific factors that link women to the disease, people with a genetic predisposition to autoimmune diseases and who are exposed to environmental factors such as viral infections, smoking, obesity, and reduced levels of vitamin D are also considered to be at higher risk.
“The reduction of the risk of developing multiple sclerosis is questionable, since the disease has a genetic component that increases the risk of alteration in the functioning of the immune system. However, controlling environmental factors can interfere with the chances of disease presentation”, says Claudia Vasconcelos, coordinator of the Scientific Department of Neuroimmunology of the Brazilian Academy of Neurology.
most common symptoms
- Fatigue (intense and at times incapacitating tiredness)
- Speech-language disorders (slow speech, slurred words, and shaky voice)
- Difficulty swallowing liquids, pastes, and solids
- Visual disturbances (double or blurred vision)
- Loss of balance
- Motor coordination problems
- walking unsteadiness
- tremors
- Dizziness and nausea
- Urinary incontinence or retention
- Cognitive disorders
- Emotional disorders (depression, anxiety, irritation)
- Spasticity (stiffness of a limb when moving, mainly affecting the lower limbs)
- Erectile dysfunction in men and decreased vaginal lubrication in women
“These symptoms or signs of possible sclerosis can be transient, last a few minutes and disappear, making the patient not give them much importance. For this reason, in the event of any sign, no matter how minor, it is advisable to seek a neurologist to investigate”, explains Alex Machado Baêta, neurologist at the Portuguese Charity in Sao Paulo.
Manu, the Brazilian patient, uses social media to talk about the challenges she faces.
“The lack of information generates prejudices. Not being a visible disease, society does not see my needs. Sometimes, due to weakness and exhaustion, I need to use the preferential queue and people don’t see it favorably. Then, when they understand it, they look at me with doubt or pity. We have to talk more about the disease, ”she adds.
available treatments
Multiple sclerosis has no cure.
Available treatments seek to stabilize and interrupt inflammatory activity over the years to improve the patient’s quality of life.
According to the World Health Organization, there are currently about 20 approved drugs.
Experts say that in addition to drug treatment, neurorehabilitation is important to prevent complications such as bone deformities.
“They are immunosuppressive drugs that regulate the reactions of the immune system. In addition to specific treatment to control the disease, drugs and techniques are used to alleviate and manage symptoms,” explains Thomaz.
“Currently, there is a true revolution in the treatment and prognosis of the disease, with a much lower risk of sequelae and degenerative progression. The current objective is to avoid as much as possible that the brain and spinal cord are “invaded” by the disease, reducing the future risk of patients”, adds the neurologist.
In Manu’s case, treatment includes follow-up with a rheumatologist to alleviate joint and musculoskeletal symptoms, vitamin D replenishment and a focus on mental health, seeing a psychologist and taking medication to control his anxiety.
“I also try to take care of my diet, avoiding inflammatory foods and do low-impact physical activity such as swimming and hydrogymnastics,” he says.
“Multiple sclerosis is like a dance partner that I always keep an eye on so I don’t step on my toe. Living with the disease is a box of surprises, every day is a new challenge and I never know what symptom I will wake up with”.
Keep reading:
* Multiple sclerosis: How an “innocent” kiss can trigger this autoimmune disease
* Multiple sclerosis: avoid saturated fats, and other eating tips to combat it
* Multiple sclerosis: an unknown disease for many Latinos
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See original article on BBC