Nadiya tells us about her role in the Butterfly in Blue fashion show and about sharing her story with the media.
My name is Nadiya and I am 26 years old and live in Ukraine. I’ve had pulmonary hyptertension (PH) since childhood. I’ve been living in a new way for over 20 years now. I try to be active, while keeping the limitations on my physical activity in mind. I have a family: a loving and understanding husband and a 3-year-old son. It was the birth of my child that led me to realise the value of life.
The Butterfly in Blue Show – it’s the most extraordinary experience to be open to the world and, above all, to yourself. Actually, it was PH that brought me to the catwalk. My first show was on 5 May 2017, on World PH Day. And my second show was this year, on Kupala Night in Lviv. Quite recently, in September, with the support of PHURDA and the Charity Foundation “Sister Dalila”, I was given the opportunity to be a model and take part in Toronto Ukrainian Festival. The Butterfly in Blue Fashion Show was staged over three days during the festival. Models with PH took to the catwalk alongside professional models to showcase ethnic clothing from Lviv designers.
The essence of the Butterfly in Blue Show was to use the prism of beauty to drive home issues relating to this disease and emphasise the importance of support in overcoming the information barrier. The title of the show reflects that people with PH have blue lips and blue fingers and the butterfly is a symbol of short life.
I also shared my story for TV. The filming itself was easy and natural. First I talked over the TV segment on the phone with a journalist from the TV station 1 Zahidnyi. That made the meeting much more relaxed. After listening to the prompts from the cameraman and journalist, my camera shyness slowly went away and I got used to the camera. You can view my story here.
I’m happy that I’m opening up and can bring my story to others. I think that this way, people will be able to not only read about a short episode from my life, but watch it too. The video clip displays what I live and breathe, and what I value, so it’s important for me that the world sees a genuine call to live fully and a call to arms.
Be open to others, be yourself, inspire and share your story – that is a must for a patient with PH. That’s the point, because that’s how you overcome your internal experiences to start down the path of confidence. The main thing is to be sincere, authentic and as you are, to do everything to improve your quality of life, to never stop striving to ‘breathe freely’. You should use every opportunity to educate those around you, especially through the media. Only then will our voices be heard!
