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My Story as a Caregiver and Patient Advocate

This all started the day we heard the words, "This is better than the best-case scenario." You can go back to your life." I realized I no longer knew what our life meant. For almost two years, we lived in hospitals, separated from my husband and older son, focused entirely on helping our younger son, Viktor, recover. Everything else stopped. How It Started In November 2017, Viktor was diagnosed with Langerhans cell histiocytosis. His treatment lasted nearly two years and included chemotherapy, followed by long periods of waiting for his immune system to recover before the next phase could begin. Like many parents, I was suddenly thrown into a world I didn’t understand. I had no medical background, yet I needed to make sense of complex terminology, treatment plans, and decisions that affected my child’s life. Viktor during the treatment Learning Medicine Language One moment from the early days still stands out.  A nurse asked me to measure Viktor’s diuresis.  I didn’t eve...

About plans and goals in future...

So let's start.
Are you making plans? Short-term, long-term. 
Do you write down your goals and plan the steps to reach them?

Or do you follow your "charted" paths, expecting things to take place by themselves, and it's up to you to respond to the challenges?
This summer was busy for us, partly because we planned to create a podcast, and so in the fall and the new school year, we entered into the first joint project with our signature: we created the Rare And Share podcast, in which Dejan and I talk about rare topics with interlocutors who made laws, moved "mountains" for their loved ones, and did things you wouldn't expect "ordinary people" to be able to do.
Patient advocacy is neither easy nor simple. But it's rewarding! 
Autumn will be dynamic, at least as it seems at the moment. At the end of the month, I am participating in a conference organized by Hrabriša - Lil` Brave One in Belgrade, and after that two more events:
  • Conference about clinical trials, organized by the Rare Diseases Database in Novi Sad 
  • Annual Conference of European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU) in Seville.

All of this is happening because I write and speak out loud about the challenges and issues facing people with metabolic disorders, such as phenylketonuria.

#PublicRelations #Media #NSBusinessTalks #AnaPataki #ZakomplikovAna
NS Business Talks, Hotel "Sheraton", Novi Sad

And because of that, I use the experience and knowledge that I have to exchange information, learn something new and expand the network of associates, maybe even friends who have solutions for these and similar problems.
Am I panicking about organizing time and travel? Maybe.
But at the same time, I am excited about the opportunities I have accepted and the possibility to help the community with rare diseases through my activism.
Patient advocacy is neither easy nor simple, but it is rewarding if I can contribute to improving the quality of life of patients or move things in that direction.

And that's what drives me to keep learning, working, and growing. This is what we teach our children, to be human, to help others and to be supportive of those who need it.
  • What are your goals?
  • Do you write them down?
  • How many plans have you achieved this year so far?
Write them in the comments, I'm interested in reading them!
Love, Ana 

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