Hello! Welcome to my blog!
My name is
Carolina Toneloto, I'm 47 years old, and I live in Brazil. I was diagnosed with
type 1 Gaucher Disease when I was 30. I'm a sociologist, professor and pianist.
After my
diagnosis, I started taking enzyme replacement therapy, with Imiglucerase, in a hospital 50 km away from my home... as
you know, every 15 days.I started to feel better and had more energy. However, having to go to the hospital so
often meant that my life had to be completely rethought...
It was
because of the life changes I experienced after my diagnosis that I looked for
a PhD program in Public Health to develop a reaserch about the characteristics
of the illness experiences with type 1 Gaucher Disease.
I finished my thesis in 2017, a qualitative researc in social sciences in health, intituled "Narratives about the experience with type 1 Gaucher disease".
While I was
doing my PhD, I began to reflect more closely about the challenges that people
with Gaucher Disease type 1 in Brazil faced: the significant changes in
routine, the difficulty to understanding scientific information related to this
rare and little-known disease, and the consequent reinterpretations of this
information, which varied according to the stock of knowledge of each patient.
It is worth
to remember that in Brazil there is a special treatment protocol for Gaucher
disease, with several medication options available, all of them distributed
free of charge through our public health service (SUS).
Living with
a rare and chronic illness requires not only adjustments in routine, but also
the construction of a type of knowledge that can help not only other patients,
but also health professionals and public policy makers.
Illness
experience with rare and chronic illnesses is very valuable! Because of this, I
am creating a proposal that I would like to develop with our Gaucher community:
to build, together, a University of
Patients.
In fact,
this idea is not new. There is a University of Patients at Sorbonne University
(in France), and other similar initiatives spread around the world. Ever since I discovered this, I have dreamed
of doing something similar, in our own way.
And this is the main proposal of the University of Patients: to ensure that knowledge arising from personal experiences with illness can also be recognized and legitimized, side by side with the biomedical knowledge about this disease.
Context:
During my
PhD studies in Public Health, I analyzed the illness experience of Gaucher
Disease through the narratives of 9 people living with type 1 Gaucher Disease
in Brazil. Besides my work being the
first (and still the only) qualitative study on Gaucher Disease in Brazil (and
one of the few in the world), I discovered 2 very significant findings:
1- that
people with Gaucher Disease in Brazil have low health literacy: they don’t
understand sufficiently/adequately the scientific information relating to their
own illness, its causes, its symptoms, and how treatments act on the body, due
to the high complexity of this information;
2- although
patients regularly comply with the treatment (which was enzyme replacement, in
the case of my interviewees), this practice was not exactly configured as
“adherence” to the treatment, but rather as an attitude of mere “compliance”
with biomedical guidelines.
We are
talking about a rare disease, with very complex scientific information. Because
of this, is very necessary to improve the level of health education of these
patients. However, I imagine that this is not a problem only for Brazilian
patients.
My goal is
to ensure that we can experience health education, producing and sharing
information in a dynamic similar to that a University: in which teaching,
research, scientific dissemination and technological tools can train
enlightened patients capable to help each other, and to clarify and direct
health professionals and public policy makers, in order to provide more
efficient and empathetic care for all of us.
How will
this be done?
First, by
creating a website, a hub for hosting educational materials.
Also,
through social networks and face-to-face meetings to exchange experiences,
including among patients, health professionals and public policy managers.
In general
terms, the Patient University will focus its efforts on three fronts: teaching,
scientific dissemination and the development of digital tools that can
increasingly make people with Gaucher Disease become true experts about this
theme.
Goals:
This
project aims to promote the health, empowerment, and autonomy of people with
Gaucher Disease through health education, putting the patient at the center of
the production of knowledge about their illness, by increasing their health
education.
Imediate
expected outcomes:
-Increasing health literacy about Gaucher Disease among patients in Brazil;
-Creation
of a hub of reliable information about Gaucher Disease, based not only on
scientific knowledge but also on personal and collective experience with this
illness;
-Encourage
more patients to share their experiences and engage in advocacy activities so
that their voices can be heard more often;
-Produce new and legitimate forms of knowledge about Gaucher Disease, placing the patient at the center of this process.
Final
considerations
The University of Patients proposal arises from the desire to improve our lives through health education. We need to be able to manage appropriately scientific knowledge about Gaucher Disease, and appreciate the knowledge born from our own illness experiences, celebrating the diversity in different ways of living and thinking about this long-term disease.
References:
TONELOTO, Carolina Franco de Souza. Narrativas sobre a experiência com a doença de Gaucher. 2017. 1 recurso online (160 p.) Tese (doutorado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas, Campinas, SP. Disponível em: https://hdl.handle.net/20.500.12733/1630970. Acesso em: 3 nov. 2024.
Toneloto CF de S. Narrativas sobre a experiência com a Doença de Gaucher tipo 1. RBPS [Internet]. 14º de junho de 2021 [citado 3º de novembro de 2024];22(4):15-23. Disponível em: https://periodicos.ufes.br/rbps/article/view/25231
Franco de Souza Toneloto C. Vivendo com a Doença de Gaucher tipo 1: Narrativas do adoecimento com uma doença rara, crônica e “invisível”. CaEP [Internet]. 9º de dezembro de 2022 [citado 4º de novembro de 2024];2(02):09-30. Disponível em: https://revista.ghc.com.br/index.php/cadernosdeensinoepesquisa/article/view/171
Tourette-Turgis C. Les patients experts et les soignants, vers des relations de réciprocité [Expert patients and caregivers, towards relationships of reciprocity]. Soins. 2015 Jun;(796):37-9. French. doi: 10.1016/j.soin.2015.04.008. PMID: 26146322.
Tourette-Turgis C, Isnard-Bagnis C. Éducation thérapeutique [Patient education]. Nephrol Ther. 2013 Jul;9(4):235-40. French. doi: 10.1016/j.nephro.2013.02.001. Epub 2013 Apr 9. PMID: 23582652.
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