Multiple
Sclerosis
Sanja Zrinski
About multiple sclerosis
Basic informationWhat is multiple sclerosis (MS)?
Multiple sclerosis is a disease in which the transmission of signals within the central nervous system — the brain and spinal cord — is impaired.
The immune system, which normally protects us from harmful agents like bacteria and viruses, mistakenly attacks the body’s own nervous system, damaging it. This disrupts the communication between nerve cells, preventing them from transmitting information correctly and efficiently.
Because these nervous system damages can occur in different areas of the brain and spinal cord, the symptoms of multiple sclerosis are highly varied.
If the nerve pathways that carry instructions to the muscles are affected, movement is impaired. Mobility becomes difficult; some people may no longer walk independently and may require assistance, sometimes even a wheelchair.
If the nerve pathways needed for normal vision are damaged, visual disturbances occur.
To understand MS, it is important first to understand how a healthy nervous system functions.
Why are nerve cells covered with myelin?
The nervous system — brain, spinal cord, and nerves — is made up of nerve cells called neurons. Neurons are structured for their function: transmitting signals. Each neuron has a long “cable,” called an axon, along which electrical signals travel to the next nerve cell. These axons can be very long — for example, the axons of the sciatic nerve in the leg can exceed one meter in length.
If the electrical signal had to travel the entire length of the axon, information transmission would be very slow. Axons are therefore wrapped in insulating material made of myelin (a combination of fat and protein), which does not conduct electricity. Multiple layers of myelin around the axons allow signals to jump quickly between uninsulated gaps called Nodes of Ranvier, greatly speeding up signal transmission. The myelin sheath also prevents the electrical charge needed for the signal from leaking out of the nerve cell.
What happens in MS due to myelin damage?
Pri multipli sklerozi začne imunski sistem napadati mielinske ovojnice aksonov v možganih in hrbtenjači. Zaradi poškodovanega mielina nastopijo težave.
1. Ker izolacija izginja, električni naboj uhaja iz živčnih celic. Ta naboj je nujno potreben za vzdrževanje električnih signalov, s katerimi informacije potujejo po živčnih celicah. Zaradi uhajanja naboja električni signal – in s tem prenos informacij – oslabi.
2. Zaradi slabše izolacije signal ne more več normalno preskakovati po živčni celici. Namesto tega je prisiljen lezti po celotnem aksonu (kablu), kar je zelo počasno in neučinkovito.
3. Izpostavljen akson je bolj ranljiv in občutljiv za poškodbe. Če je poškodovan mielin, informacija sicer potuje počasneje, vendar še vedno potuje – če pa se poškoduje in uniči akson, signal ne more dalje. Prenos informacij se povsem ustavi.
What causes MS? Why is myelin destroyed?
The cause of myelin destruction in MS lies in the immune system.
Normally, the immune system protects the body from harmful intruders like bacteria and viruses. Sometimes, however, it mistakenly identifies the body’s own cells as foreign and attacks them. Diseases caused by abnormal immune responses to the body’s own tissues are called autoimmune diseases, and multiple sclerosis is one of them.
In MS, the immune system specifically attacks the myelin around nerve cells in the brain and spinal cord.
The exact reason why the immune system begins attacking myelin is still unknown. It is likely a combination of genetic susceptibility (MS is not inherited, but certain gene variants increase the risk) and environmental factors that can trigger the development of the disease.
Sanja Zrinski
and why there’s nothing wrong with doing things your own way
Sanja lives in Krapinske Toplice but comes from Vukovar. From there she carries warm childhood memories — and heavy stories etched deep beneath the surface. She was a child of war, displacement, and uncertainty. For the past twelve years, she has lived with a diagnosis of multiple sclerosis.
She grew up among animals — horses, cows, sheep, dogs — and they were her great love. She intended to dedicate her life to helping them: easing their pain, treating injured paws, rescuing them from colic and other digestive troubles. With that in mind, she became a veterinary technician. Now the animals return all the care she once gave them.
It is hard when you end up bedridden, in diapers, unable to manage even the simplest tasks, when you feel entirely useless. But the animals needed her — she had to feed them. She had to wash their bowls so they stayed clean. She had to brush and groom them so flies and ticks wouldn’t settle in their thick fur. She had to let them out to graze and bring them back in. At the times when she most wanted to stay in bed, pull the blanket over her head, and sleep through another painful day, Sanja got up and took care of her animals. And slowly, day by day, they lifted her — on her feet and in her mind.
Sanja has one main goal: to stay independent for as long as she can. A small step for humankind, but a giant one for a person living with an incurable illness.
#RealTalk
“Pri vsem mi je zelo pomagalo, da sem članica Društva za multiplo sklerozo, saj sem z njimi lahko točno takšna, kakršna sem.
Ni mi treba razlagati, zakaj se včasih malo zazibljem, zakaj se mi jezik zatika, da nisem pijana, samo malo me je “streslo” zaradi bolezni.
Njim ne rabim razlagati, razumejo. To so ljudje, ki bijejo isto bitko kot jaz.”
“Delala sem kot veterinarska tehnica. Odraščala sem na Plitvicah med živalmi – konji, kravami, ovcami, psmi – in to je moja velika ljubezen.
Mislim, da so mi te živali res veliko pomagale, da se nisem počutila nekoristno.
Bodimo realni: ko zboliš, ko pristaneš v postelji, v plenicah, se res počutiš nekoristno.
Ampak te živali so me potrebovale – in jaz sem se prisilila, da jim dam jesti, da jim umijem sklede, jih počešem. Živali so me na nek način zdravile. Dvignile so me.
Zaradi njih nisem ostajala v postelji – vstala sem, da jim odprem vrata, da lahko gredo ven, potem spet, da jih spustim noter.
Tako so me malo po malo dvigovale.”
“Vas zanima, kako izgleda moje oblačenje? Primerno je za skrito kamero.
Težave se pojavijo z ravnotežjem. Ne moreš si obleči hlač “normalno”, ampak zato se lahko nasloniš na zid, sedeš na stopnico, stol. In se pač oblečeš tako – in greš dalje.
Ni konec sveta zaradi tega.
Če na primer moraš sesti ali če ne moreš obuti superg stoje – zakaj pa bi moral?
Tudi v trgovini jih preizkusiš sede, ne stoje.
Ne morem se obleči tako, se pa lahko malo drugače. Potrebno se je znajti.”
“Vsakič mi je bilo slabše tudi po kakšni travmi.
Ampak kaj sploh je travma?
Za nekoga je travma že to, da ne dobi novih čevljev. Moje travme pa so bile drugačne, res težke. Izgubila sem očeta. Mama je zbolela. Težke stvari, ki te pretresejo do dna.
In vedno mi je bilo slabše po takšnih dogodkih … dokler nisem sama s sabo razčistila, da na nekatere stvari preprosto ne morem vplivati.
Lahko pa verjamem, da bo bolje.
Zelo mi je pomagala vera. Ko skleneš roke, si z Bogom. Najdeš notranji mir. In ko najdeš ta mir, je vse lažje. Lažje dihaš. Lažje živiš.
In potem spoznaš: morda danes ne zmoreš, ampak jutri boš zmogel — in jutri res pride.”
“To je tisti del, ki ga nihče ne vidi – razen mene.
Na zunaj je očitno: ne morem voziti kolesa, nimam ravnotežja. Ampak tisti nevidni del …
Nevidni del je bolečina. Nevidni del je utrujenost. Nevidni del je tudi to, da — razen moje družine — nihče ne vidi, kako zahtevno je že, da si počešem lase, da se obujem, oblečem.
In to je tisti del, ki ga nihče ne vidi, ko stopim ven.”
“Spomnim se, ko sem zbolela. Začetek je bil zame šokanten.
Zelo bi mi pomagalo, če bi takrat kdo prišel k meni in rekel: »Hej, malo potrpi. Ni vse tako hudo, kot deluje na prvi pogled. Imaš pravico do terapij. Imaš pravico do nadomestila, če ne boš več mogla delati. Ni vse tako črno. Šlo bo. Lahko me pokličeš, lahko me karkoli vprašaš. Izvoli mojo telefonsko številko. Ni konec sveta.«
To bi mi na začetku pomenilo ogromno.
Zato danes, ko slišim, da je nekdo na novo zbolel, hočem biti jaz tista, ki pride in reče: »Ni vse tako črno.«“
#INSPIRE
The INSPIRE project is carried out under the Erasmus+ programme.
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or CMEPIUS. Neither the European Union nor the granting authority can be held responsible for them.