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Witnessing the Reality of Rare Diseases Through Photography

Storytelling, emotion and art are deeply intertwined. In some cases, the most compelling stories and deepest feelings can be conveyed without words, and we’re able to absorb the artist’s journey simply by viewing their work.

Such is the case with the virtual exhibit ERes Arte, an initiative carried out by Sanofi Genzyme Spain in collaboration with the Federación Española de Enfermedades Raras (FEDER). Launched at the end of 2019, the photo competition invited rare disease patients in Spain, as well as their families, friends and caregivers, to submit photographs that captured their rare experience, with the exhibit’s ultimate goal to raise awareness about a patient population that often suffers without being seen. 

“‘ERes Arte’ is a way for Sanofi Genzyme and FEDER to express different viewpoints to a large number of people,” said Francisco J. Vivar, Head of Sanofi Genzyme Iberia. “We believe that it is the best way to give visibility to the issues, dreams, hopes and frustrations faced by this community, showcased through an artistic exhibition.

Over 130 images were submitted and an independent jury of health experts and photographers had the unenviable task of selecting only 29 for the final exhibit. The number 29 is significant because Rare Disease Day, observed on the last day of February, landed on February 29 in 2020 because of the leap year. It was truly the rarest day of the year.

Originally planned as an in-person, multi-city event, the exhibit was opened virtually due to the COVID-19 pandemic, although there are hopes to host a physical version in Spain this September, to coincide with FEDER’s annual meeting.

The exhibit website is currently only available in Spanish. All 29 images and descriptions are below.

There Are No Limits

Artist: Juan Lorenzo Collado Gómez

On a rainy Sunday morning the half marathon runners pass through the streets. Among them is Valentin, in his wheelchair, pushed by his father. They are the race heroes. I cannot run because of a knee injury but I take photos as I walk, capturing how the runners share the last of their water, their wish to scratch a second off their time, their exhausted faces. As Valentin approaches the finish line, the rain stops and you can see the blue sky between the clouds.

My Life In Your Hands

Artist: Janet Figueroa

Hope, improvement, union. All of these values and more are reflected  in this image captured with my cell phone. I place my trust in my great friend Carlos, an athlete head-to-toe. In 2019 Carlos participated in the Second Challenge for Equality, in which they climbed Mount Teide, a volcano in the Canary Islands, and the highest point in Spain. Carlos doesn’t let his rare disease put limitations on his experiences.

Together for Butterfly Skin

Artist: Leticia Pellicer Franco

Andra and Naiara are girls of different ages, with different tastes, born in different cities. They probably never would have met, but they share something that connects them:  Butterfly Skin, or Epidermolysis bullosa (EB). They were both born with this genetic rare disease that causes blisters and wounds on the skin, as well as internally. Thanks to the National Butterfly Skin Families Meeting project, organized by the Asociación DEBRA Piel de Mariposa (DEBRA Butterfly Skin Association), Andra and Naiara can see each other at least once a year in a place where they feel understood and represented, surrounded by people like them.  

Chrysalis

Artist: María Cano Muñoz

Butterfly Skin (or Epidermolysis bullosa) makes skin as fragile as a butterfly’s wings. Everyday actions like walking or eating can be extremely painful. The inspiration for this photo came from thinking about the strength, sensitivity and, above all, the love mothers always give us.  

Keeping On My Way

Artist: Mónica Merino Madrazo

My name is Mónica. I am 45 years old and I have a rare disease called Gaucher Disease Type I. I have always felt different or special, spending more time in hospitals and in my bed than at the park or at school. I always had to use a wheelchair, crutches or another person for support. Life has taught me to be stronger, to not to fall despite the difficulties, and to overcome any adversity that comes my way.  

Small But Strong

Artist: María del Pilar Domínguez Pintiado

How small are my hands compared to everything that life has given me? I have achondroplasia (dwarfism) and I measure 104cm (~50 inches). The small size of my hands doesn’t matter, because thanks to the people who love me, I have everything I need in my life. 

One Step More to Life

Artist: Calixto Casasola Casado

Diagnosed with MPS I shortly after her birth, our daughter Rosana fights every day to overcome and break down the barriers imposed by her disease. A year ago, a respiratory problem forced her to sleep with an oxygen machine, but she has never complained about it. A music lover, she also loves going to the movies, painting, visiting museums and Greek mythology. She has written a small book and been on a radio program too. Nothing stops Rosana! 

Hope Essay

Artist: Montserrat Serra Arnau

This picture reflects three concepts: overcoming fear, hope for a better future and thanks to all patients, caregivers, healthcare professionals and families, without whom nothing would be possible.

Dreaming to Breathe

Artist: Inmaculada Rosa Prada

Our little boy came into this world with Congenital Diaphragmatic Hernia (HDC), surrounded by great medical professionals, who were waiting for him with all the necessary means to guarantee his survival. His diaphragm operation was performed at 36 hours of age. Our first hug, accompanied by hope and fear, happened at 9 days. And finally, after 57 days, after a slow but satisfactory recovery, he came home with us. Today, 5 and a half years later, we remember those moments with sadness, but also with happiness, hope and joy, because we are lucky to be able to enjoy life with him. 

At Your Side

Artist: Eva del Ruste

Surprise, pain, anger, fear, sadness, uncertainty, loneliness. A thousand questions without answers. This is the beginning of many untold rare stories. In Vera (pictured in center) I see my nephew Diego and many other children who, like him, are no longer here with us. Vera is an 11-year-old girl without a diagnosis. A few months ago, some students with rare diseases from the Jean Piaget School visited another school to raise awareness. The welcome we received was fantastic, as you can see. Vera's mother says,  “Vera doesn’t have a name for her illness, but instead has a name that defines her: V for brave (‘valiente’ in Spanish), E for hope and special (‘esperanza’ and ‘especial’ in Spanish), R for rich (‘rica’ in Spanish) in friends and in education, and A for love (‘amor’ in Spanish)”.

Jon, a Warrior with Ataxia Telangiectasia

Artist: Xavier de Arquer Blanc

Jon is a 16-year-old with Ataxia Telangiectasia. He can be shy, but when he participates in marathons he lets himself go and laughs and jokes with his teammates. He has done over 10 marathons with the Zurich AEFAT Team, although last year he had to pause his training for few months when he was hospitalized due to the flu. Ataxia Telangiectasia patients are fully aware of their disease and fight numerous obstacles every day. Participating in marathons helps to raise awareness and funds for research. 

Mother and Daughter Against Anxiety

Artist: Carles Viñas Gràcia

On this day my daughter wanted to paint and play with her cousins. She enjoyed it and even danced a bit. However, I can see her anxiety growing, caused by all the noises and factors from an uncontrollable environment. My daughter has Mecp2 Duplication, a rare genetic disorder. People who don't know what it is can’t understand it. They just see a yelling or crying little girl and they look at me. And if the cries also come with her pulling my hair, people stare even more. They don't know the pain that these looks cause. It’s not always easy. It hurts me when I don’t have all the patience I want or don’t know how to react or redirect the situation. But despite the anxiety, I will never stop doing everything I can for her to enjoy and experience life. We will fight together against the anxiety. The hug in this image makes the moments we live together warmer and more beautiful.

A Hug

Artist: Anonymous 

The woman pictured here is a rare disease patient’s sister and a nurse at a school for children with rare diseases. Every day she does her best to teach her students more than basic knowledge, but also love, respect, empathy, and equality - values as necessary as knowing how to add and subtract. She shows how a simple hug is often the best help and the best gift. 


The Fight Goes On

Artist: Maria Pilar González Alonso

"If you hear galloping, think about horses, not zebras," advised my doctors. But zebras exist, and patients with Ehlers-Danlos exist too. The joint problems began when I was 13 years old. At 16, the general pain forced me to leave ballet. We listened to specialists say the word “hypermobility” repeatedly, but Ehlers-Danlos syndrome is much more than having "soft" joints. Contractures, subluxations and joint blocks are the order of the day. Pain is normal. Dysautonomia is not far behind, with its dizziness, fatigue, sweating and tachycardia. My heart doesn't always work the way it should. This is an invisible disease. But we exist, and it hurts. 

Faithful Friend

Artist: Montserrat Montero Rivero

This photo shows the union and love between Aitor, my son, and his faithful friend Ponce. Aitor is affected by Mucolipidosis II / III. Despite his serious illness, he is a very happy boy, who loves animals and enjoys their company. You can see his smile when he is hugging Ponce in this picture. His strength and courage make him an example of overcoming adversity, a role model for everyone, and a source of pride for me.

Pompe's Friendship

Artist: Manuel Cobos

Friendship is one of the strongest bonds that we can have in our lives. When you have a serious and disabling disease, your life changes. Your experience ceases to be that of the children surrounding you, who run and play in the park. Your best friend becomes the one who, even living hundreds of kilometers away, understands you and what you're experiencing. That support makes you stronger and helps you overcome obstacles.


Transform the Rare into Extrodinary

Artist: The Sant Joan de Déu Research Institute

Ingrid is a child with a rare disease. While the disease doesn't define Ingrid or her family, it has had a huge impact in their lives. The photograph is a  reference to the American World War II wartime poster produced by J. Howard Miller, entitled “We Can Do It!”  The image was designed to inspire strength, courage, dignity and improvement. Ingrid has learned that sharing her experiences and knowledge with people who are going through a similar situation is a way to improve both her life and that of other patients and families. Thanks to people like Ingrid, rare can be transformed into extraordinary.

Love From Minute One

Artist: José Luis Valencia Sandoval

These twins show each other their unconditional love and support. Pedro, on the left, suffers from Cornelia de Lange Syndrome. We have always fought to give him as normal a life as possible. He is an example of overcoming, strength and dedication - although he’s also a rascal! The days are intense and often exhausting, but this is our life and we love it. Lola is the mirror in which Pedro looks in, as they have always been together. Their life can't be understood without the other one. Our family slogan is "Smiling is living" and our smile is our flag. We always do our best to decorate our days with a smile. Hard times go by faster if you can look around you and see smiles in your family's eyes. We are a team. 

Healing's Way

Artist: Carmen Ricote

Living with a disease is always complex, but when it is your child, everything becomes more difficult. Carolina has Opsoclonus-Myoclonus Syndrome (OMS), a rare neurological disease that only affects 1 in 5 million people; and that is characterized by fast and multidirectional eye movements (opsoclonus), sudden muscle contractions (myoclonic jerks), lack of coordination (ataxia), irritability and sleep disorders. Since October 2018, Carolina has gone to the hospital every month to receive her "superpowers", as we call her treatment. We have a life philosophy: "We can't always choose the music that life gives us, but we can choose how to dance.”

The Illness

Artist: Manuel Cobos

Being healthy is being able to live a normal life, but when you have a disease like mine your life is linked to a hospital. In addition, during the year, many doctors and physical and speech therapists treat me. Even though I can get my medicine, I can’t run, jump or play like other children. I always wear my emblem on my wrist, "Everyone with Pompe." Although the term disease (‘enfermedad’ in Spanish) comes from the latin word infirmitas, which means 'lacking firmness', I DO have firmness. Despite my disease, I have my dreams and I want to have all the time in the world to realize them.

Just Live

Artist: José Daniel de Vicente Corbeira

Life with a rare disease is a long and winding road, with constant medical appointments, diagnostic tests, and hospitalizations. It is not easy - but we learn to value the most important things in life, to live apart from trivial problems. We try to enjoy every moment to the fullest and delight in what makes us happy, sharing the journey with the people who help and support us. We try to live every day with optimism, and hope that a treatment will be available someday.

Hope In Your Wings, In Your Heart and Inside You

Artist: Carmen Santisteban Bedia

I’m Carmen and I have deep bilateral hearing loss. My 3-year-old daughter was diagnosed with a rare disease without a name and without treatment when she was 9 months old. Since that time, we have received the genetic test results that indicate both of us have a rare disease. The purple color I wear represents the hope that helps us to overcome bad times. We want to give visibility to and raise awareness about rare diseases and disabilities. These words explain what I want to represent with my photo: 
Give your wings to the wind,
Fly strong against storms,
Turn your fear into courage,
Smile at the adversities,
You will always see light on your way.

Training for the Road (2)

Artist: Laura Faro Chamadoira y Teresa Calheiros Cruz Vidigal

This photo represents that anyone with a disability and a rare disease can overcome their barriers, fears and insecurities. The objective of adapted sport is to achieve overcoming through union. Associative movement around rare disease is essential to overcome the difficulties faced by those affected and their loved ones. The association’s strength promotes overcoming, union and hope. Raising awareness through solidarity projects is essential to continue giving the visibility that rare diseases need. Because diseases are rare, not people.

 
Play and Laugh

Artist: Chelo Ruiz del Castillo

My professional life revolves around rare diseases and the families that suffer from them. Having the chance to contribute to their battle motivates my daily life: to know those who try to overcome the obstacles they find in their way, despite an uncertain destiny. Sometimes you must stop and enjoy the details of life that make us happy, and realize what really matters.

 
My Pregnancy, A Miracle Full of Hope

Artist: Marta Merino Marí

First, I want to highlight the “Hope” in the new life that grows in me. But I would also like to recognize “Overcoming,” because I’m in a stable phase of my illness to be able to be a mother (always with the consent and supervision of my doctors), and “Union,” with my husband as love can beat almost anything. 

Aquatic Soul

Artist: Martín Araya Fídel

Marga suffers from Ehlers-Danlos Syndrome, a genetic condition that causes joints and skin hypermobility, subluxations, tendonitis, internal organ problems and pain. She started swimming when she was a child, and her greatest hope was to reach the Olympics with a synchronized team. Life and scoliosis took her down other paths, but she never gave up swimming as a hobby. During high school and college, she matched her studies with the pool and rehab. She always found time to swim! Nowadays, at over 40 years old, the pool is Marga’s escape route and her best way to do exercise. Swimming has been and will continue to be an important part of Marga's life.

Aisha

Artist: Bianca Bufit Civit

Negative and non-constructive thoughts do not allow us to see the light. When you lose motivation, healthy thinking can bring you back to the innate light that lives inside us. And then, step by step, as nature makes its way, you can overcome those foggy moments. Only we have the strength to make our minds an ally and not an enemy. Thanks to art I have found a way to feed my soul and to feel myself in the present moment, with no other thought than creativity. I am what I want to create, not my thoughts.

All Equal, All Different

Artist: Juan Carlos Gil Peña

Throughout my life I have met different people with rare diseases. I have used these matches as a metaphor for the individual members of society: we are all equal and different, with our virtues and defects. (All matches shown come from the same box)

The One

Artist: Noah Higón Bellver

Smiling is a shortcut to the inexplicable. Towards what keeps us safe. If someone looked at me when I smile, they would probably see a soul. If someday you decide to look at me, just treat me as you would treat yourself. If someday we cross each other in this life, hold my hand tightly.

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