I finally broke free from the disease, which was burdening me

5. 5. 2022

Hi, it's me again, Arti. In my previous story Face to face against HAE, you could read something about my life with HAE, my boundaries and feelings. Because of HAE, I was sick very often, missed school and got injectable treatment repeatedly. The disease was limiting not only me, but also my entire family.

All this, however, has radically changed over the past two years. I was successfully admitted to high school. There, I didn't really confess to anyone about my illness. I had no reason either, because right after I had joined the new school, I started a new treatment to prevent HAE attacks, which made me no longer have to use rescue so often. In fact, I haven't had any swellings since the start of the new treatment.

It's an incredible feeling. I finally detached myself from the disease that had overwhelmed and burdened me for years. A disease that caused endless stress not only to me, but to my entire family and loved ones. I was finally able to start living a normal peaceful life.

I have a lot more time for school now and no more lost hours due to illness. Although I study at high school and until not long ago I used to miss classes almost every week, now I manage school fairly well. I attend all sorts of camps, sports trainings and school events with a clear head and without getting stressed because of early departure due to unexpected HAE attacks. I have made huge progress in skating too. I started competing with my team not only in national Czech competitions, but we also got abroad in Hungary, and our team even won the second place at the national championship in our category.

But I have to admit that after overcoming HAE, my attention shifted to new obstacles and challenges, that children my age usually face: school, trainings, relationships, new responsibilities. I felt like I had finally climbed the hill that was the biggest obstacle of my life, only to realize that normal life also carries plenty of challenges.

By living like a normal person now, I started noticing problems that didn't bother me so much before because all the attention used to be on HAE. At that point, it dawned on me that stress belongs in every person's life and that I would be meeting it every day and for my entire life.

On the other hand, I gradually figured out that my previous experience with the disease was useful in some way. So far I've only seen the bad things at HAE, but now — thanks to the new treatment — I could realize the bright side of experiencing it as well.

It increased my empathy and perspective on people. By experiencing pain myself and knowing what it really is, I then learned how to recognize it in other people and help them. In HAE Junior, I met younger children who are afraid of the disease, and I learned to encourage and inspire them to challenge and overcome their fear.

Moreover, thanks to my painful experience with HAE, I became more appreciated when someone did something nice for me, and to notice kindness even where a person would not normally think of looking for it.

After overcoming HAE, climbing up the hill of the biggest problem and torment of my life, it's almost hilarious how all those other problems seem tiny compared to HAE. This saying is actually true: “What doesn't kill you, makes you stronger.

In my case, HAE really made me stronger. This disease does not mean only restrictions, pain and stress. I would never have become such a resilient person without HAE. And I believe I'm not the only one who perceives it this way Unfortunately, not everyone acknowledges this.

Therefore, in conclusion, I would like to send a message to all those who are troubled by HAE: Don't give up. Nothing is impossible. You too will win over HAE. And then you will also learn for yourself how the daily issues of normal people are small and surmountable in comparison with the disease.

I believe in you!

Arti

Contact:

HAE Junior non-profit organisation
Wichterlova 2372/8, 
Prague 8, 182 00
Organisation ID 08749787

info@haejunior.cz
704 007 717

Contact for journalists:
media@haejunior.cz

Media kit download
 

Contact us

    Will you support us?

    Support us - HAE Junior cz

    You can send your financial donation also to our bank account 2001782429/2010.

    Partners:

    PharmingTakedaKalvista
    Lekarna.czexceedorphan

    National & international affiliations:

    Logo EurodisČeská asociace pro vzácná onemocněníPacientský hubAIP
    napo

    Media partners

    Adalo Solutions s.r.o. © 2020 - 2022 | All rights reserved
    Donate
    here >>
    Donate here >>