Living with Multiple Sclerosis

Could you please tell us a little bit about yourself?

 

Hi, my name is Ady and I’m from the Czech Republic. I was born and raised in Prague but went to SMUS for grade12 as an exchange student and graduated last year from grade 13 in Prague, Czechia.

 

Would you mind sharing a bit about your autoimmune disease and experience?

 

I have multiple sclerosis which is characterized by your immune system attacking the myelin sheets that coat your nerves, causing numbness, tingling, or loss of function. For me and most other people, the first symptom was optic neuritis, which is the inflammation of the optic nerve, and it made me go temporarily blind, until I got admitted to a hospital for steroid treatment. The process of getting my diagnosis was quite long because in order to be diagnosed and start an actual disease modifying treatment, you need to have at least two brain or spine lesions that appeared at different points in time. MS used to be a career ending disease because there’s no cure, and all of the DiseaseModifying Therapies have only been developed quite recently. I started using a DMT this year and although the side effects can be a pain, it works very well for most people. While DMT’s are not a cure for MS, they do slow down its progression and postpone any possible flare-ups or disability. Personally, I haven’t had many flare-ups so far, but starting a DMT early is always a good step to take.

 

When did you first find out you had your autoimmune condition? How did you feel?

 

My first symptom appeared when I was 19 but MS is a very tricky disease to diagnose, so I’ve only gotten my diagnosis recently, after a year of waiting, when an MRI showed a new lesion on my brain. It felt kind of surreal at first because it just hit me that my life would never be the same. I couldn’t be reckless anymore and I needed to imagine a future with it. It felt kind of isolating too because most of the disease is invisible and some people just don’t grasp how careful you need to be sometimes. On the other hand, though, it has made me very aware how luckyI am to be alive and still able to change the course of my disease. Actually, getting a diagnosis has felt kind of relaxing too, after spending so much time wondering whether I have it or not, and over all, it has made me more disciplined and focused on my health which has been a pretty good takeaway.

 

What are some challenges you have faced, how have you overcome them, and what lessons did you learn from those challenges?

 

One of the biggest setbacks that MS brought me has been not passing the health exam for Military School forMedicine because obviously, they get very strict about serious health conditions. Honestly, I’m still in the process of overcoming this because it is an unfair disadvantage to have. But it has become a part of my routine to remind myself that even with MS I can still be strong, I can be athletic, and I can still help others, even if it’s not in the wayI wanted. In the process of overcoming it, I’ve learned that I’m not a worse version of myself pre-MS, I just need to work a little harder and adjust to help myself stay that version.

 

Do you have a message for kids who are going through something similar?

 

No matter if it’s MS or any other disease you’re dealing with, don’t let it stop you from living your life. Having an autoimmune disease is a question of planning things ahead, being aware of what you need, and listening to your system, but that doesn’t mean you should give up on the life, studies, or career you had in mind for yourself, you just need to know when to slow down and recharge. I also cannot stress enough how important it is to try and stay healthy, exercise, make dietary adjustments, keep your stress levels low, and fix your sleep schedule, even if you are already getting treated. It is so incredibly important, and it makes a huge difference to stay active.