My story

This space was created with the purpose of giving a voice to those living with Kennedy’s Disease. Here you will find real testimonies, told in the first person, reflecting the everyday experience of the disease: the first symptoms, the journey toward diagnosis, the physical and emotional changes, and the way each person learns to adapt to a new reality.

Each story is different. Some speak of uncertainty and fear; others of resilience, family support, and inner strength. All share the importance of feeling heard and understood. Through these accounts, not only is the disease made visible, but also the person behind the diagnosis.

This section aims to be a place of connection, empathy, and support. An environment where those living this situation can feel identified, and where family members, friends, and professionals can better understand what it means to live with Kennedy’s Disease. Because sharing experiences is also a way of helping.

We invite you, if you are living with this disease, to share your testimony here. We know it is not always easy to put into words what you experience each day; that behind every symptom there are emotions, doubts, and difficult moments. But there is also courage, growth, and a strength that often goes unnoticed.

Your story can help others who are walking the same path. It can offer comfort to someone who has just received a diagnosis and help another person feel less alone. This is a safe space, built on respect and understanding, where every experience matters.

If at any moment you feel ready to share your experience, this is a place where you can do so. Your voice matters, your experience counts, and it can make a difference in the lives of others.

José Miguel

Diagnosed with X-linked Bulbospinal Muscular Atrophy (or Kennedy’s Disease), classified as a rare disease.

I am José Miguel Morcillo Mora, I am 53 years old and I have been diagnosed with Kennedy’s Disease since I was 50. Before receiving the diagnosis, 10 years passed with consultations with neurologists in many places across Spain and without any results. Many tests, many electromyograms, many falls, extreme fatigue and loss of strength… and still no diagnosis. A great deal of despair for my family and for myself.

Until November 10, when I met Dr. Celedonio Márquez, who urged me to undergo a genetic test. That test revealed Kennedy’s Disease.

And then… what do I have?

It is a neurodegenerative disease that, at the moment, has no cure or specific treatment and, moreover, being classified as a rare disease, makes progress in research and management very difficult.

Diego

Hello everyone. My name is Diego. We are 7 siblings, or rather, we were 7; now there are 4 of us left.

I am the youngest of all and, for better or worse, this disease, due to genetics and because we are so many siblings, skips every other one. I also have a sister, and women carry the gene but it does not develop in them, at least that’s how it was explained to me. My eldest brother had the disease and managed well until he was around 68, and he passed away at 77. During those 9 years, things changed for him, from using his electric wheelchair until he became ill with pneumonia and died in the hospital. Another brother did not have it because of the “every other sibling” pattern, and then came my sister, who was a carrier but not affected. Then it passed to my brother Paco, who also had the disease. He lived alone and at 66 he caught pneumonia and in the hospital, due to a mistake, he choked and died. Then there is another brother who is healthy, and next is me, the youngest. When doctors discovered the family tree pattern, they would ask my brothers during their appointments whether I complained about anything or noticed something. They said no. At that time I was about 46, working as an international truck driver, and whenever I met my family or brothers, they would ask how I was, and I felt great. Neurologists wanted to see me to confirm their suspicions. One day I went with one of my brothers to his hospital check-up, and they examined me too. And indeed, they were not mistaken: I had Kennedy’s Disease.

I continued with my truck as if nothing had happened, but doctors suggested early retirement at 46, saying I would qualify immediately because of the disease. It’s true that after being told I had it, I gradually started noticing symptoms more. Due to a difficult work situation, I decided to retire, and within 20 days I was officially retired, no longer working, beginning a calmer life.

My brothers were already more advanced in the disease, and I saw how it progressed in them. I tried to take better care of myself. Today I am 63 and I still walk with a cane. My mind is strong, and I continue with the desire to enjoy my family and travel; I love driving and traveling around Spain. I have hope in the advances being developed and I hope to benefit from them when the time comes. I recommend following a healthy diet and avoiding weight gain due to lack of exercise, as that helps you feel better. Today I have no pain, no cramps, I rarely choke, and I live my life like anyone else. Greetings to everyone from Villarreal, Castellón.

Gonzalo

Diagnosed with X-linked Bulbospinal Muscular Atrophy (Kennedy’s Disease), considered a rare disease.

My name is Gonzalo, I am 52 years old, and for a long time I did not understand what was happening to my body. I had always been an active person. As a child, I was very athletic: football, athletics, cycling… any excuse was good to keep moving. I never had significant physical problems and always felt strong.

It all started with minor falls. I would trip for no apparent reason, as if my knee was not responding properly. I thought it was distraction or lack of attention. Then diabetes appeared, something I did not initially connect to anything else. Over time I began to notice fatigue during walks. Walks that I used to do effortlessly became tiring. Climbing stairs became a challenge; I lacked strength and needed to hold onto the handrail. Something that had never been a problem before.

Later came dysphagia. Swallowing certain foods became difficult. I choked a few times and it was truly frightening. That’s when I really started to worry. It wasn’t normal for someone who had always been strong and active to feel this way at barely fifty years old.

What confused me the most was not understanding why. I constantly asked myself how this could be happening to me, someone who had exercised all my life and taken care of myself. I visited different specialists, underwent medical tests and analyses… but for a long time no one could find the cause.

Finally, after a genetic test, the diagnosis arrived: Kennedy’s Disease. Hearing that name was hard, but at the same time it was like fitting all the pieces of the puzzle together. Suddenly I understood the falls, the fatigue, the loss of strength, the difficulty swallowing. I realized it was not a lack of willpower or fitness. It was something that had been gradually developing over the years.

Today I know I am living with a neurodegenerative disease for which there is currently no cure. It is not easy to accept, but at least now I know what I am facing. Understanding what is happening to me has allowed me to adapt, listen to my body, and value every small daily achievement.