SMA Newsroom

Could you please tell us a little bit about yourself?

Hi! I am Olga, a Ukrainian SMA patient. I Live in Chernivtsi, a city located in west Ukraine, quite small but the most gorgeous in my humble opinion.

I have the most severe type of SMA, SMA type 1. I breathe with the help of an artificial ventilator. Even though my condition is relatively difficult, my 20 years have been full of adventures and positive moments, and this is not going to stop!

Even in the hardships of wartime, I continue to work as a freelance personal stylist, studying fashion and learning English by myself.

I live with my mum Nataliia on whom I rely in my life. She feeds me, assists me medically, carries me to a wheelchair and back, this list can go on forever. But foremost, she always helps me stay optimistic and psychologically supports me. She also works in the creative field, being an embroiderer and designer.

 

Also, about your life before the war and what you were lacking then in terms of living with SMA.

Unfortunately, even before the war, I lacked a lot of things when it comes to managing my disease. We don't have specialists who are well-informed about SMA and how it can affect our bodies. We also have a lack of palliative care in Chernivtsi.

Because of the absence of doctors, I can't have an operation for my scoliosis in Ukraine and it's very difficult to find a medical specialist in other fields. Also, due to restrictions in our medical system, I cannot have an electric wheelchair. Even a manual one is hard to get because I can't sit vertically like the majority of disabled people.

A lack of medical equipment and consumables is also a big problem. The government didn't provide us with any of our artificial ventilators, sanitation probes, etc.

My city is also not wheelchair accessible. I can't access a lot of hospitals, shops, public transport, and let’s not even mention entertainment venues such as cafés and cinemas. There are only a few places with ramps.

 

How the war changed your life and what are you lacking now? (Both in general and in terms of SMA)

War has really affected our feeling of security and stability.

Now we live in an anxious reality, when every day a rocket could damage our home or our civil infrastructure, which is especially scary for me, as my life depends on an artificial ventilator.

Supplies and nutrition that were hard to find in the past have now become even more challenging to obtain and of course, more expensive. We can see how even simple things, such as food and clothes, have become much more expensive. This is true for almost everything, it feels, especially for low-income and disabled people. Quality of life has changed drastically and what was then difficult has now got worse (or you could say even more challenging).

 

What will be the first thing you do when the war is over?

We would celebrate Ukraine's victory over the forces of evil and I will continue my road to achieving my professional, personal, and life goals. I would like to see my country rebuilt with new opportunities for everyone.

We'd simply enjoy our life!