Let's run MS away!
(EN)
Multiple Sclerosis is a neurodegenerative disease diagnosed usually between 20 - 40 years old. It affects the central nervous system, so brain, spinal cord and optic nerves. The cause is still unknown, so there’s no cure for it, but there are treatments that can slow down/stop the progression. However, a chronic disease is not just about the DMT (disease modifying therapy) but much more. That’s why patient organisations such as EMSP (European Multiple Sclerosis Platform) play a crucial role in a MS patient's wellbeing, including myself. Well, this fundraising will contribute to EMSP’s initiatives. Now let me tell you what I like about EMSP:
📈 Data, data, data → I love that their projects are data-driven. Without the power of data, many issues would not have been discovered or resolved, and EMSP is clearly focusing on this just by looking at their projects. To name a few: IMSS (Impact of Multiple Sclerosis Symptoms), MS Barometer, and MS Data Alliance. More about their projects can be found here: https://emsp.org/projects/
🙋Giving a voice to young people → There’s no way I can summarize what being young with a chronic disease means, so I’m just going to say this: Young people’s voices are underrepresented in patient organizations, and EMSP decided to create a space for that, where young people can also develop and be able to influence policies to reflect the younger population’s needs.
🌱Holistic approach to MS healthcare → At EMSP, they are not just data nerds; they are also tackling healthcare from many other angles: highlighting the importance of the nurse in MS care, creating communities, staying updated on the latest research on MS and communicating it to the EMSP community, advocating for the importance of a balanced lifestyle, and many others.
🦸The people → Well, none of the above would be possible without the incredibly dedicated people who have made it their purpose to improve the lives of people with MS.
EMSP’s values align with my values. If they do the same for you, you can make a donation to support the cause. And if you are in Brussels on November 3rd, come and say ‘Hi’ at the start/finish line. The entire team will be there!
(RO)
Scleroza Multiplă este o afecțiune neurodegenerativă diagnosticată de obicei între 20 - 40 ani. Afectează sistemul nervos central, deci creier, măduva spinării, nervii optici. Cauza încă este necunoscută, așadar nu există un tratament care sa o vindece, dar există tratamente care pot opri/încetini progresia. Cu toate astea, o afecțiune cronică nu e doar despre terapia modificatoare a bolii, ci mult mai multe. De aceea organizațiile de pacienți precum EMSP (European Multiple Sclerosis Platform) joacă un rol crucial în bunăstarea pacientului cu SM, inclusiv pe mine. Ei bine, acest fundraising va contribui la inițiativele EMSP. Dați-mi voie sa prezint ce îmi place la EMSP:
📈 Date, date, date → ador că proiectele lor sunt bazate pe date. Fără puterea datelor multe probleme nu ar fi fost descoperite sau rezolvate, iar EMSP în mod evident se focuseaza pe asta doar uitându-te la proiectele lor: https://emsp.org/projects/
🙋Oferă o voce persoanelor tinere → Nu pot face un rezumat cu ce înseamnă să fii tânăr cu o afecțiune cronică, așa că voi zice doar asta: Vocea persoanelor tinere este sub reprezentată în organizațiile de pacienți, iar EMSP a decis să creeze spațiul pentru asta, unde și persoanele tinere se pot dezvolta și influența politici care să reflecte nevoile populației tinere.
🌱Abordare holistică în SM → EMSP nu se focusează doar pe date, ci abordează mai multe perspective: importanța asistentei, creare de comunități, stau la curent cu ultimele noutăți legate de SM, promovează importanța unui stil de viață echilibrat și multe altele.
🦸Oamenii → Ei bine, nimic din ce am prezentat mai sus nu ar fi posibil fără implicarea acestor oameni care au ca scop îmbunătățirea vieții persoanelor cu SM.
Valorile celor de la EMSP se aliniază cu valorile mele. Dacă e la fel și pentru tine, poți susține cauza noastră cu o donație. Și dacă ești în Bruxelles în 3 noiembrie, hai la start/finish, întreaga echipă va fi acolo!
My Updates
September Update
Wednesday 16th Oct
For this update I want to talk about Employment and MS. As I was mentioning in the initial description, MS is usually diagnosed either when you already have a job or planning to get one.
What I noticed being involved in European organisations is that chronic patients across Europe are often considered an economic burden, but at the same time no efforts (or very small ones) are made in supporting them to maintain a job. And so, many in this situation are unable to find a job and be financially independent which forces them to request financial support from the government, such as handicap pension. Since I had a positive experience with my employer, I naively thought employers nowadays are more open and inclusive, which is unfortunately not true and there’s still a lot of discrimination in this regard.
EMSP together with other organisations worked on the European Employment Pact to establish a framework for improving employment conditions and opportunities for people living with chronic diseases, including MS, by advocating for policy changes at the EU level.
Here is the European Employment Pact for People with Multiple Sclerosis: https://emsp.org/wp-content/uploads/2015/05/150520_EMSP_PACT_A4.pdf
August update
Tuesday 15th Oct
Patient organisations play an essential role in advocating for improved healthcare policies and influencing government decisions. EMSP was one of the European organisations that have been successful in influencing European Union health policy, ensuring that MS patients have better access to healthcare, social services and rehabilitation.
One such project is the European MS Barometer, which gathers data from MS patient organisations in various European countries to assess the state of MS care, treatment availability, and social inclusion for people with MS. It provides a comparative overview of how well different countries are supporting people with MS. With this data, EMSP has been able to highlight disparities in care across European countries and advocate for more uniform standards.
I love you.