Invisible Brain Injury Association
The Invisible Brain Injury Association brings together people with ABI survivors (from TBI, stroke, tumors and other brain pathologies), family members and friends, relatives, friends and neurorehabilitation clinicians. The aim of this association is to raise awareness of ABI invisible impairments. We share first-person testimonies and professional opinions.
The project grew out of the first-person experience of most of the people who make up the association.
Social and professional ignorance of these invisible consequences, does not facilitate ABI survivor´s rehabilitation or acceptance. For this reason, we think it is very important to draw attention to them and make awareness of this invisible handicaps through testimonies.
Our main objective is to make ABI survivors, people around them and clinicians understand the most invisible consequences of an acquired brain injury.
We are dedicated to raise awareness of the ABI invisible impairments through writings, videos, and talks. We share first-person testimonies from those affected and their families, as well as technical contributions from neurorehabilitation clinicians.
We also try to improve the quality of life of ABI survivors with tools and support.
Blood biomarkers to improve diagnosis and management of mild traumatic BRAIN Injury in vulnerable patients.
“We are currently participating as a patient association in this project, funded by the European Union. We are contributing our perspective and experience to help achieve a better detection of a possible brain injury after a mild TBI, and improve mild TBI assessment and monitoring.
The project incorporates measurement of promising blood-based brain biomarkers to predict immediate and mid-term complications after a suspected mild TBI. This in-vitro diagnosis solution could aid to reduce excessive brain medical imaging scan (CT scan) and associated radiation, while reducing the time of beginning a rehabilitation when necessary.”
I am Aurora. I have lived with ABI as a result of a TBI caused by a serious traffic accident in 2005. All the health care attention was given to the rehabilitation of my mobility. I learnt of my cognitive, emotional and behavioral impairments that took a long time to have a diagnosis, specific neuroimaging tests and receive adequate rehabilitation.
As a clinical psychologist, at my new pace I give psychological support to ABI survivors throughout their rehabilitation and acceptance process. My mission has become to raise awareness of these invisible symptoms, through talks, the blog, my book.
With this same aim I have created this association, surrounded by a wonderful team with great enthusiasm to work together.
I am Verónica, from A Coruña, mother of Cecilia and Teo and urban architect. Since 2004 I have been living and working in Madrid as a consultant in urban planning and mobility, especially dedicated to children and their relationship with the city and public space.
In 2013 I had a polytraumatic train accident with a severe TBI that caused Brain Injury. I did neurorehabilitation at CEADAC, where I discovered brain complexity and its relationship with personal autonomy. Since 2015, I have been running “Road to CEADAC” workshops on accessibility and mobility, to help recover personal autonomy in urban displacements after ABI. In 2020 I did the Master’s Degree in Disability, Personal Autonomy and Dependency Care from the Menéndez Pelayo International University and the Law and Disability Foundation.
I am Alicia and I have a brain injury that is invisible to the eyes of the majority. It is difficult for me to find my place, because most of the capacities that I recognized in myself have not diminished since my motorcycle accident. It’s some processes that I didn’t pay attention to (such as planning, starting tasks or taming my will) that don’t work like before. I imagine my head connected to a funnel with a very narrow outlet. On one side, a hotbed of ideas, hypotheses and projects; to the other… a trickle that often seems meager. I understand, more than ever, the value and beauty of teamwork. Senior Telecommunications Engineer and Coach specialized in Adolescents and Family, always with a genuine interest in the person and now, also, obsessed with the mechanisms that encourage us to take action. I accompany people of different ages and different abilities, sure that everyone’s path leads to understanding that our talents are complementary.
I am a neuropsychologist and I have been working for more than 20 years at the State Brain Damage Care Center, where every day I realize how important it is for affected people and their families to understand why the limitations they experience appear and how to deal with them. they.
I am Fernando, I have a wife and four children, and they say that dad is “LAWYERPOET”. I think they say this because, after discovering and removing in 2015 a brain tumor that was formed in my mother’s womb, today I cannot practice as a Lawyer or dedicate myself to managing companies. My impaired ability to create memories and the difficulties I now find in planning and carrying out any work, physically and intellectually, however simple it may seem, do not allow it. My reconstructed life, after the brain injury, is allowing me, not without effort, to make the most of my poet and father side. And, as a volunteer, to be able to help many people who, in my previous life, I would probably not have been aware of their needs.
I am Belén, a neuropsychologist and contextual therapist who, after more than 10 years of experience in invisible brain injury, has been able to see the uncertainty that accompanies both the person who suffers it and their environment, and the suffering that this generates on a daily basis. a day. On this road, many changes, doubts, fears, insecurities tend to appear as part of the process, as we are not always taught or have the tools to face this new life challenge.
My daily objective is to accompany by training with useful tools to face the change that allows people to move forward finding a new meaning in their lives.
Rafael P. Martínez
My name is Rafa, I am an educator and I am very interested in everything related to diversity and social inclusion. Since 2021 I live all this in first person. In February of that year I had a stroke and as a result I have acquired brain injury, “something” that limits my ability to stay focused, memorize or communicate with others. These impairments, which are sometimes hard to recognize at first glance represent a great challenge for me. For this reason, after passing through CEADAC and meeting Aurora Lassaletta, I began to be aware of the importance of making invisible brain injury visible.
I am Raquel, a collection of puzzle pieces between adventurer, bookseller, writer and psychologist, in search of rediscovering an identity.
I had a FAVA (arteriovenous fistula) that took more than a year to be diagnosed and that got complicated in the operating room.
I have problems with attention, organization, noise, inhibition of distractors and cognitive fatigue. In return I have gained a different way of relating to the world and a desire to move on.
I am Sandra Fernández, I was a special education teacher. I have two daughters, 5 and 8 years old.
Five and a half years ago, 26 weeks pregnant, I suffered a brain hemorrhage, due to a cerebral arteriovenous malformation (AVM) from birth. But life gave me another chance, always with a smile and hope!
Andrés Melero, 47 years old, Ingrid’s partner and Nora, Chloe and Elsa’s father. In 2018 epileptic seizures revealed my Brain Tumor. I was operated and they removed a piece of the left hippocampus and amygdala. The surgical success left a hole in my brain with no neurons. Cerebrospinal fluid only. Today Amnesia, Raynaud’s, Aphasia, Hyperacusis, Anomia… are some of my invisible injuries. Family, friends, writing, music, sports and networks, my best medicine. Love and humor help me a lot.
I am Santiago, I am 70 years old, a Natural Sciences teacher until 2005, when I had a car accident in Asturias. It was night time, it was raining and I was alone. I was very unstable for a month and a half, then rehabilitation in La Beata, on an outpatient basis until today. My family is the best thing I have in the world, along a wonderful relationship with many friends. I am officially disabled, although I am well enough to function in almost everything. I am delighted to participate in our association.
Hi, I’m Luz. In 2017, I had a myocardial infarction with 18 minutes of heart stop, which caused me a brain injury with low vision sequelae. I see a fairly blurred tunnel. I do not have good stability. In my head… noises, cross conversations annoy me, there are days when I get up as if I were drunk.
Back in August 2021, at my tender age of 46, an ischemic stroke began to attack me at night time with malice in order to spread my ABI more fiercely through my little brain. This left me with important physical sequelae, as well as other less obvious and unknown ones, by the general public and that it is necessary to make them visible. Two days later, already in the stroke unit of the San Carlos Clinical Hospital, a stroke – this time hemorrhagic – tried to attack me again. When I left the hospital clinically stabilized, everything was unknown until I discovered my CEADAC, which has opened my eyes and given me hope that a new future is possible. And here we are! Always forward!
I’m Nacho. I am a biologist, teacher, father and a ABI survivor partner. I have accompanied her throughout her recovery and acceptance process. Personally, I have experienced hard times due to the emotional and family burden that it has entailed. I have learned to live with the invisible ABI disabilities and have learnt a lot along the way. At first, I forgot about myself and, as my partner has improved, I have started myself and taking more care of myself.
I’m Aniana, a clinical psychologist, mindfulness instructor, and friend of an ABI survivor. I am passionate about learning, working with groups and contributing the mindfulness adapted tool to accompany people that live along with an ABI.
I am David Monge Cuenca, I was born in August 1979, I am a Senior Automotive Technician and Professor and Director of Road Training. I suffered 2 head injuries and multiple fractures throughout my body in 2005 and 2016. With the great help of many clinicians and my immense desire to advance and improve, little by little I am reaching my challenges, relearning, improving and adapting to each moment and circumstance of my life. With great desire and effort, I studied Neurorehabilitation and Occupational Therapy, and I will to continue helping by sharing my learning and life experience.
I am Esther from Cuenca, 39 years old, who has lived since 1997 with an ABI that nobody informed me about, after poorly treated meningitis. Transferred to Madrid, 3 months in the hospital, I went through the chronic situation of total blindness and no mobility that gave way to a drug-resistant epilepsy, a visual field of less than 3 degrees and visual agnosia that took more than 3 years to be diagnosed. And that has never been treated. The life of a 13-year-old teenager suddenly changed on an Ash Wednesday. Without information and advice, the isolation that my sequelae caused me forced me to grow up and look for my own strategies, and become the woman I am right now. Therapeutic Pedagogy teacher, active since 2005, with the sole objective of doing my part for a more inclusive education. I have the support of my husband Manuel and our 4-year-old son Juanma, and I try to enjoy every moment with a smile and optimism.
The invisible brain injury
Coginitive Impaiments in Traumatic Brain Injury, Stroke and other Acquired Brain Pathologies
A work written by Aurora Lassaletta where she collects her experiences with brain injury.
“Almost from the beginning I was collecting my experience as a diary to try to understand and resolve what was happening to me. A few years later this kind of diary became a book, which tries to make visible the less obvious consequences of ABI.”