They support patients with multiple sclerosis

There are around 46,000 in Poland. diagnosed patients with multiple sclerosis, and in the world about 2 million 800 thousand. You are a foundation that supports the sick. How are you carrying out this mission?

We focus primarily on educating patients. Our main task, which we set before ourselves when creating the foundation, were patient conferences. It was about equipping them with the necessary knowledge provided by experts and creating opportunities to meet other patients, exchange experiences and less formal talks.

"SM - and so what ...?" This is the title of the conference that took place in September in Gdańsk. The meeting was held with the substantive support of the University Clinical Center in Gdańsk. One of the clinics has an MS Treatment Center there.

Patients appreciate the creation of this center very much. We hosted nearly 160 patients and over twenty speakers in Gdańsk. You could say that these were two days filled with knowledge. In addition to discussion panels, we created the opportunity for individual talks with experts: doctors, psychologists and physiotherapists. We returned to Gdańsk with our conference after a three-year break caused by the pandemic. In May, on the occasion of the World Multiple Sclerosis Day, we invite patients to Gdańsk again, and further meetings in other cities are already planned.

Due to the development of medicine and the increased access to treatment, the progression of the disease can be significantly slowed down, and the patients can lead an almost fully normal and active life, e.g. work or become parents. However, these are people with disabilities, the kind that you may simply not see at times. What are you doing for these people?

A few months ago we came up with the project Invisible. Patients often came to us who said that they were misunderstood by the environment, that there were days when their strength was weaker. The idea was born to draw public attention to the situation of all people with invisible disabilities. We are starting the project at any moment. On the one hand, it will be an information social campaign, and on the other, a pilot project in the Tri-City. We will train representatives of offices, institutions and companies there, and we will provide patients with tools that will allow them to communicate their situation to the environment. We have developed an invisible disability symbol that will be printed on various accessories. Many people reported to us a problem with, for example, parking spaces. When a healthy-looking man gets out of a car parked on an envelope, he is often met with reluctance or even aggression from the environment. There are suspicions that he has taken someone else's parking card. It is similar when taking seats in public transport.

Let's go back to working for people with multiple sclerosis. The Primer SM was created. What is it?

Patients often feel confused after learning about their diagnosis. Many questions arise in their heads. As a result, they look for answers in various, not always appropriate, sources. On the one hand, the MS Primer will be a guide for patients with reliable, verified information, and on the other, it will be a kind of notebook in which the patient will be able to write down questions to the doctor, symptoms and other aspects related to the treatment process. The primer will be in a hardcover. However, we do not have the resources to finance this project. We launched an online fundraiser at www.elementarzsm.pl . If our idea seems close to someone, we encourage you to support our activities.

Thanks for the interview.