2023-10-30 21:00:14
Achondroplasia is a medical condition that affects one in every 25 thousand children born annually. Although it is mainly characterized by short stature, its implications go much further. Those affected by this condition may face orthopedic, cardiorespiratory, and hearing complications. Despite its prevalence, achondroplasia is often overlooked in public health conversations and in society at large.
Stereotypes surrounding this disease are abundant, and often, those affected themselves may feel that their situation is immutable. They may resign themselves to believing that their fate is sealed and there is no room for improvement. Not only outside their family environment, but sometimes even within it, these individuals can face various forms of abuse and discrimination.
This world we live in often focuses on appearances and fitting into certain standards, it is essential to remember that diversity is what enriches our lives. Achondroplasia, one of the most common forms of dwarfism, is a condition that deserves our attention and understanding.
For this reason, within the framework of “World Short People’s Day”, which is commemorated every October 25, the initiative “My story goes further” stands out, presented by the biopharmaceutical company BioMarin, which uses an animated story to Raise awareness about achondroplasia.
Beyond short stature
It is important to mention that achondroplasia is a medical condition that affects one in every 25 thousand children born annually (1). Although it is mainly characterized by short stature, its implications go much further. Those affected by this condition may face orthopedic, cardiorespiratory and auditory complications (2)(3). Despite its prevalence, achondroplasia is often overlooked in public health conversations and in society at large.
In an effort to change this reality, BioMarin has created “My Story Goes Beyond,” an initiative featuring Liz, an inspiring animated character living with achondroplasia. Through a story and an animated video, Liz faces daily challenges such as running, picking up objects, and attending doctor’s appointments. Most importantly, Liz shows children that facing achondroplasia doesn’t mean giving up on your dreams. She finds support in her imaginary companion, Hakuna, a very large dog who is the family pet.
In this regard, Dr. Eduardo Franco, medical director of BioMarin, highlights the importance of this initiative by stating that its main objective is to actively involve children affected by achondroplasia and other forms of short stature. This allows them to identify with Liz and recognize her own potential to pursue her dreams. Education and the search for information are essential, and “My story goes further” aims to facilitate this process in an inclusive way, involving the entire family on the path to understanding and acceptance.
Voices heard and understood
This special date provides an opportunity to focus on raising awareness and promoting the inclusion of those living with achondroplasia and other short stature conditions in our society. The “My Story Goes Beyond” campaign aligns perfectly with this goal, offering a platform for these voices to be heard and understood.
Achondroplasia is a complex medical condition that not only affects height, but can have a significant impact on the daily lives of those who suffer from it. From orthopedic problems to hearing conditions, the range of challenges faced by people with achondroplasia is wide and varied. Understanding their narratives and providing support are crucial steps in the process of improving their quality of life and well-being.
Achondroplasia Awareness
The “My story goes further” campaign not only seeks to raise awareness in society, but also to provide support, representation and inspiration to patients and their families. Through their website (www.mihistoriavamasalla.com), the initiative provides a platform for people to access valuable information and connect with Liz and Hakuna’s story, as well as other inspiring experiences related to achondroplasia.
In short, achondroplasia is much more than short stature. It is a complex condition that affects a significant proportion of the population. The “My Story Goes Beyond” campaign is a crucial step in the right direction to raise awareness of this condition and promote inclusion and understanding. As we commemorate “World Short People’s Day” let us remember that diversity in all its forms is what makes our world unique and valuable.
Stethoscope
Successfully finished the 5th. edition of Medical Expo, commanded by Carlos Salazar Gaytán; a whole world of medical devices that is difficult to imagine. In this framework, on the last day of the expo, Access Day 2023 was held, organized by INEFAM, headed by José Carlos Ferreyra and Enrique Martínez. Analysts participated in this forum, in addition to the cream of the pharmaceutical industry and health sector, such as Rafael Gual (Canifarma), Dr. Octavio Gómez Dantés (INSP), Dr. Germán Fajardo (UNAM), Cristobal Thompson (AMIIF), Dr. Éctor Ramírez Barba (PAN deputy), Selenia Gómez (ISPOR), Xavier Tello and Sharon Reyes (Axios International). Unmissable event.
1) Schelhaas, Andrea, in: https://kidshealth.org/es/teens/dwarfism.html
2) Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genet. 2014;7:117–125. Published online June 24, 2014.
3) Pauli RM. Achondroplasia: a comprehensive clinical review. Orphanet J Rare Dis. 2019;14.
Jorge Arturo Castillo has a degree in Communication Sciences (CC) and a master’s degree in International Relations (IR) from the FCPyS of UNAM. He is managing partner of Comunicación CM, from where he edits specialized media in the pharmaceutical, health, energy and technology industries. He has been a journalism professor of the CC degree, at UNAM, for more than 27 years. He is a content generator and has held various journalistic positions in the main media outlets in Mexico, as well as some international ones.
#story #awareness #hope