Opinion Sur Joven

Fear paralyzes. What do people fear? The list includes as many items as people living in this world. But some of the items at the top of the list are death, tragic deaths or the loss of a beloved one… The list is also topped by chronic diseases that deteriorate quality of life to the point of causing total disability.

Just as we gather more knowledge of these disroders and their cures, the suffering of those affected becomes more present, more visible, whether because people live longer or because the media keep showing it. But just as fear (and pain, we could say) paralyzes, information soothes.

Multiple sclerosis (MS) is an example of those diseases that deteriorate patients’ quality of life due to the chronic and profound damage they generate, though without causing death. Especially considering it’s often detected on young adults in their twenties.

From a privileged place -the 25th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) held in Düsseldorf, Germany-, Opinión Sur Joven had the chance to talk to MS specialists about this pathology, its characteristics and how science keeps evolving to fight it.

Non-stop

MS is a chronic disease of the central nervous system, generated by the swelling or loss of myelin, a substance that protects nerve fibers. It causes serious difficulty in moving, loss of balance, sexual dysfunction, pain in limbs and cognitive impairments. However, this pathology does not cause death, but progressive and constant deterioration.

The origin of myelin swelling is unknown, but scientists believe the cells that normally fight infections attack myelin as if it were an invader. “The triggering factor that generates MS remains unknown. But it is believed weather, especially decreased sunlight exposure, has an influence. There’s a genetic factor as well: MS is more common in Caucasians of northern European ancestry; instead, American Indians are protected of the disease by their genetics”, explains Jorge Correale to Opinión Sur Joven. He’s the immunology director at FLENI (an Argentine foundation fighting against children’s neurological diseases).

Maybe said genetic factor is the reason why almost three million out of the total MS patients registered in the world live in the northern hemisphere, especially in Sweden, Denmark and Canada. Furthermore, the disease is significantly more common among women, who account for two thirds of the total amount.

“In Argentina, there are between 6,000 and 7,000 people with multiple sclerosis, according to epidemiologic estimates calculated all over the country. The prevalence of the disease in the northern region of the country hasn’t been exactly determined, since ethnical and weather factors are different”, assures Edgardo Cristiano, MS specialist at Hospital Italiano (Argentina).

Both Cristiano and Correale agree upon the importance of the fact that the specialist the patient has resorted to conduct a complete diagnosis, taking into account not only the damages shown by the magnetic resonance imaging (MRI) but also the medical record and all symptoms. Multiple sclerosis symptoms tend to generate confusion at the initial stage.

“For instance, MS is most commonly mistaken with the cerebrovascular disease (strokes in small arteries). Neurologists must talk to their patients about previous symptoms. There isn’t a specific test to detect multiple sclerosis. So its diagnosis is based on criteria”, says Cristiano.

Said initial confusion may cause anxiety in patients when they suffer their first “attacks” -that’s how MS symptoms are called-, followed by uncertainty about their health.

That lack of knowledge lasted for years in the case of Alejandra Paredes, a 44-year-old physician who was diagnosed at 24, but started with symptoms when she was 20.

“When I had my first attack, there weren’t elements to elaborate an accurate diagnosis. Ten years later, I was able to undergo an MRI”, Alejandra comments to Opinión Sur Joven.

“I debuted with hemiplegia, which caused me a difficulty to walk with my lower limbs. I had to undergo a rehabilitation process. We may suffer motor or sensorial attacks with a neurological base, which may cause long-term effects.

Alejandra receives a standard MS treatment, consisting in interferon injections three times a week. Today she isn’t suffering from any long-term effects: “Luckily, I’m within the acute disease group (that’s how less chronic patients are called). As my doctor says, I go hand in hand with the disease. Your body lets you know when you need to stop and pay attention”.

How does her body let her know? “I often suffer muscle spasms, but when I notice something’s bothering me, I relax and talk about it with my neurologist. This disease has to be understood”, she points out.

When Alejandra started having MS attacks, she was a young adult (in most cases, MS is detected in people aged between 20 and 40). Since she’s a doctor, she supposed she might have been suffering from MS. When it was confirmed, she got scared: “Some cases cause many neurological effects. Chronic cases are terrifying. But I said to myself, ‘well, let’s start rehab and try to get better’. I really trust medicine”. However, though her MS is less chronic, the disease left intangible effects, such as infertility. “Multiple sclerosis affects the most fertile age of women. I tried to get pregnant, but neurologists decided I had to wait. My evolutional age slowly progressed, so then I tried and wasn’t able to get pregnant. It was very complicated because of the drugs, and then I suffered attacks too. But I always see women with MS who were able to get pregnant”, she says.

Hope and support, the keys

Over the last years, significant advances were registered regarding the drugs to treat MS. Cristiano explains a stage of second-generation drugs is beginning. “They’re apparently more powerful than the classic ones, and easier to take because they only need to be injected once a month or every three months, and even oral drug tests are close to be concluded”, he assures.

The first and best-known drug of the new generation is natalizumab, created by Biogen Idec; it’s already available in the United States and Europe, and it could start to be sold in Latin American countries in 2010, after health officials authorize it.

Like any other new drug, it also poses risks because it hasn’t been tested for a long time. “Notwithstanding the trials, it’s in real life that unexpected effects appear, because the drugs are used for a longer time and in more patients. That is, new drugs have the advantage of being more effective than the old ones, but their drawback is the uncertainty about their safety”, Cristiano comments.

As for MS-specialized physician, researcher and NYU professor Frederick Munschauer, natalizumab will truly improve patients’ quality of life and not just stop deterioration.

Munschauer, who also lectured at the Düsseldorf MS congress, says the new drug prevents swellings, generating neurological protection and progressive repair. “This opens the possibility for a cure for the first time”, he concludes.

Notwithstanding the drugs, the social environment of the patient is an irreplaceable palliative. “Family support is essential; emotional support is very important. They’ve had a lot to do with my recovery”, Alejandra says.

She resorted to group therapy with other MS patients. “Although it’s hard because some of the people who attend these sessions are suffering many MS effects and are in worse conditions, it allows seeing that others are going through the same as you and getting to know their solutions. You go to rehab with people who are in worse conditions than you are, and if they can’t make a movement you help them; we all help each other, and that makes us feel better”.

In spite of suffering multiple sclerosis, Alejandra can lead a normal life, going to work and exercising her profession (dermatology).

And although in comparison with other MS patients she is in a privileged situation, she still gives a piece of advice for the people suffering this disease, which could be useful for anyone: "I would recommend them to keep their enthusiasm and their hope. The way you approach the disease is essential. You have to be willing to move ahead and see the future. You have the possibility to lead a normal life, but it’s important to respect the disease and pay attention to what your body says. And to never ask yourselves ’why me?’, but ’why not me?’".

Illustration: Lorena Saúl

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