Welcome to new Polish OI-Association!
Interview with Agnieszka Czoch-Tokarczyk, President of Association of People with Brittle Bone Disease – Poland
Who are you?
My name is Agnieszka Czoch-Tokarczyk, I am the president and one of the founders of the new Association of People with Brittle Bone Disease-Poland (together with Karolina, Ewa, Magda and Izabela). In Polish they are called Stowarzyszenie Osób z Wrodzoną Łamliwością Kości – Polska
Privately, a happy wife and mother of 2 teenagers. I became part of the large OI family some years ago thanks to my 16-year-old son Konrad who has type 3 OI.
Still looking for members and sponsors
Our Association is very young, it was established (again – as a continuation of the previous Association) at the end of 2023. At the moment it has about 50 members – 20 people with OI and the rest are parents of children with OI. We are supported by volunteers who are members of our families, nurses and doctors.
We are at the stage of recruiting more members – encouraging them to be part of our OI Community mainly through Facebook and Instagram, but also through word of mouth. Now it is a big challenge for us, but also such a challenge is currently acquiring sponsors because as a new Association we cannot have subsidies from the government.
An integral part: Annual rehabilitation camp
As a continuation of the previous Association we organize 2 week rehabilitation camp for our members during the holiday season. This year there were 80 people, of which over 20 in wheelchairs. At the camp we not only train under the supervision of physiotherapists who know our disease, but also have time for fun, workshops, sightseeing, integration and exchange of experiences which is very important especially for families with small children.
We always invite doctors and orthopaedists dealing with OI for the camp. Similarly like in other countries, adults with OI in Poland are struggling to find the doctors from different specialisations who are familiarised with OI. That’s why sharing experiences during the camp is extremely valuable.
Many challenges that require dedication and optimism
Building such an organization from the ground up, especially with the challenges of funding and outreach, takes immense dedication and optimism. Since last year we have introduced the tradition of weekend Christmas Eve meetings in various cities in Poland for members of and their families.
For us (members), the Association is not only an organization but a community full of support and inspiration, because together it is easier to overcome challenges and face the difficulties resulting from OI:
- We want to build a more friendly and open world, showing that each of us has an equal chance.
- We are working on our website where we want to place, among other things, a list of facilities dealing with administering medications, a list of specialists operating on OI, information on tests etc. At the moment this information is not available in one place.
- We would like to have our Association’s business cards with the most important information and phone numbers of specialists to be available in every hospital (maternity ward) in Poland.
- In the future, I have a dream to create a system of holiday exchange of houses/flats (house swap) between OIFE members to get to know the customs, culture and beauty of other countries better.
The founders of the new Polish OI-organizationAgnieszka: „Fragility does not define strength”
I am an optimist, and I enjoy every little thing. But one of the happiest days in my life was recently after a rehabilitation session when I managed to organize everything well and hear compliments about the Board that was responsible for everything.
The scariest moment for me is always every Konrad’s surgery or fracture. I am currently not working professionally. On a daily basis I take care of my son Konrad, I manage the Association and pursue my artistic (creative) passions.
It is important to show that we work together, that together we create stories full of strength and determination. As a mother of a teenager with OI, I see that through their exceptional strength and determination.
![[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]](https://oife.org/wp-content/uploads/2021/11/Haley-Brown-illustration-300x236.png)
