My name is Dominika and I am from Poland. This blog is a very special one for me and I hope you enjoy it! Just a reminder for the end of the year to look back, reflect and give a big hug to the people you love.
Happy holidays! Merry Christmas – Wesołych Świąt!
xo, Dominika 🙂
We all have that person that is always there to guide us and make us stronger. When you are a young person and have the added benefit of HAE in your family, you know that person is your rock!
For me, that is my mother- Dorota.
My mum has been a nurse in the neurosurgery department for 30 years, 2 of which she was the head nurse. She has a Bachelor degree in Marketing and Management and a Master’s degree in Economics.
She has spent her whole life working hard and making sure my siblings and I have everything we need. And I couldn’t be more proud of her!
HAE came into our lives when I was 4 years old. My dad had an attack in his throat while he was in Sweden. There was no knowledge about HAE in Poland at that point. My mum was looking everywhere to find help and information.
We went to different cities and different doctors all the time. It was like a battlefield, and it was hard. I remember this one time my mum had to “fight” for our medication because the health minister in Poland decided to withdraw the refund on HAE medication. She was fearless!
For as long as I can remember, my mother has always been the most significant support to our family. She ensured we were all aware of HAE and knew everything we needed to know.
After discovering the Polish HAE organization – the Association for the Support of Patients with Angioedema Swelling Beautifully- my mother finally took a deep breath of relief. She knew we were not alone.
At the annual meetings, we had the opportunity to meet amazing people from all over the country. We exchanged knowledge, experiences, and contacts. We have also been to the Global HAE Conferences, meeting with international experts, listening to other people’s stories, and meeting the HAEi Youngsters. Knowing we are not alone has changed everything for us.
My mother is also great support while administering my medicine. Mainly because she is a nurse. You cannot do better than that as a tutor. But I have to be honest, it wasn’t always easy for her.
I feel we often forget to look at our caregivers and remember that they are also affected by our HAE. I know my mum feels stressed about the attacks. She is probably anticipating the when and how bad or how long will the next one be.
It is her biggest pain to see us in pain.
She taught me to stay strong and calm, to feel powerful and fearless. She also made sure that I knew how to fight for myself! The best lesson she taught me was understanding that HAE does not define me or make me different. I can live my life to the fullest #beyondHAE.
Mum, you are a fighter and my hero!