Meet our community

Everyone affected by CPA has their own unique experience of living with the disease. Read what some of them have to say. If you or someone you know is affected by CPA, we also have a private support group on Facebook. Join us here.

Wilbur
Wigan, UK

Hi! I’m Wilbur. I’m 9 years old, I’ve only recently been diagnosed and it's all a bit strange to me, but I can tell you what it feels like.

Because of my CPA, I get what I call The Wobbles.

Most of the time, I look like any other kid you’d see at the park. But a "Wobble" is like a mini-stroke that happens, and it surprises me when I least expect it. One minute I’m standing up or playing, and the next, my left side just decides to stop working.

When a Wobble hits me, it’s like my body suddenly forgets how to walk or stand. My left arm and leg won’t do what they’re told, and I can’t stay on my feet by myself. I have to rely on my mum and dad for everything until it passes, which makes my body and my brain feel really, really tired.

Even when I’m not having a full Wobble, my leg aches every day and I get bad headaches that make me sit down and rest. I have to take some horrible-tasting medicine to try and stop the Wobbles from happening so much. It isn’t really working yet, but I hope that it starts to help soon!

The Wobbles used to only happen every few weeks, but now they happen a lot. They can last for hours, and when my body wakes up again, I’m exhausted. It’s like I’ve run a whole marathon while just sitting still.

The hardest part about CPA is that it’s a bit of a secret. On some days I can be totally fine! But because my brain is so unpredictable, I’m not always safe to move around on my own. I never know when a Wobble is going to jump out and surprise me.

I really hate the Wobbles because they mean I can’t play rugby anymore, which is sad. But I still want to go and cheer on my teammates whenever I’m feeling well enough! I still watch Wigan Warriors with Grandad. My family call me “Wilbur Warrior” now and that makes me laugh.

I’m sharing my story because almost nobody has heard of CPA. It’s a bit scary sometimes, but I’m doing my best to stay brave. Even when I’m wobbly, I’m still me! I want to do some fundraising with my family and friends, so that people know about it and one day I might be able to meet someone else who has it, and we can be friends.

Emil
Lund, Sweden

My name is Emil. I am 25 years old and live in Sweden. In April 2019 I had my first of six cerebral hemorrhages. As far as I knew, I was completely healthy before I suffered my first brain hemorrhage. The symptoms I got were thunderous headaches and vomiting. My last cerebral hemorrhage occurred in August 2020. I experienced the same symptoms but this time I lost my speech and feeling on the right side of my body and I had my first epileptic seizure. I regained these abilities after a while. CPA affects me cognitively with brain fatigue and daily headaches. After my repeated cerebral hemorrhages, I also have severe back pain. I am currently undergoing an experimental drug treatment in the hope that my vascular malformation will decrease in size. In the future, I hope that research will be able to give us who have CPA an opportunity for some form of treatment. With that said, I personally wish I could somehow get my previous life back.

Juan Manuel, Suzana and Joan-Marc
Mallorca, Spain

Our names are Juan Manuel and Suzana and we are Joan-Marc's parents. Joan-Marc is 11 years old and was diagnosed at eight. The initial symptoms he experienced were paralysis on the right side of his body. The hospital that we visited carried out tests and said that everything was normal, but it wasn’t. It took a further three months to get any kind of diagnosis. We were first told that it was a deep AVM. However, after the scans were shown to other specialists around the world, the majority of them said that it was CPA. Our lives have completely changed. Suzana was a flight attendant and has given up work to take care of Joan-Marc full time. He can no longer attend school as he’s always very tired - even for short walks. One of the hardest things is seeing how lonely he gets. We try to stay positive and find happiness each day. We have faith in God and in the doctors, that they will find a treatment and that one day we can live without fear.

Sebastian
Minnesota, USA

Our CPA journey began when our son Sebastian was just 3 years old. He started having frightening stroke-like episodes that caused temporary weakness on his left side, vomiting, and severe headaches. After a hospital visit in Minneapolis, he was diagnosed with multiple large AVMs — something doctors there had rarely encountered because of their size and number. Surgery was initially planned, but before moving forward, we sought a second opinion at Boston Children’s Hospital — a decision we still thank God for.

At Boston, Sebastian was re-diagnosed with Cerebral Proliferative Angiopathy (CPA). Doctors explained that embolization surgery could actually do more harm than good, so they chose a more conservative approach and monitored him closely. Over time, we learned how to manage his monthly episodes with rest, hydration, and a calm environment. Physical and occupational therapy also helped improve his left-sided weakness.

During regular scans, doctors discovered that the CPA was causing small areas of brain damage, meaning his brain was no longer compensating as hoped. When Sebastian was 5, he underwent an indirect revascularization surgery to improve blood flow and help prevent further damage. Thankfully, the surgery was successful. At his six-month follow-up, new blood vessels had formed and no new brain damage was seen.

Today, Sebastian is 6 years old and thriving. Most people would never know the challenges he faces. Alongside this journey, we are also raising a younger son with the rare genetic disorder Cri-Du-Chat, so our family understands uncertainty deeply. Yet despite the fear and challenges, we live a joyful life filled with faith, gratitude, and hope. Sebastian’s story has taught us courage, resilience, and the importance of living in the present moment. We hope sharing it encourages others facing difficult journeys of their own.

Susanne and Håkan
Lund, Sweden

Having a child who has such an unusual diagnosis such as CPA is hard to bear. Watching everything they have to go through, including their pain and side effects of medication. Repeated hospitalizations in the intensive care unit gives us great anxiety and fear. We live with sadness and worry about our child's future. As a parent, you want to do everything for your child, but the information we have received says there are no treatment methods. Our hope is for research and more knowledge about this unusual diagnosis. Living with this diagnosis is lonely - not even healthcare professionals fully understand the disease, and there are not many that are specialized.

Mar, Biel and Gabriela
Majorca, Spain

My name is Mar and I am Gabriela’s mum - she is our only child. We discovered that Gabriela had CPA In May 2017 when she had her first transient ischemic attack (TIA) - she was four years old. In the years that followed, we have been battling against this complex disease. We have tried many different medications with varying success. We eventually found one that lessened the severity of her symptoms. In September 2019 she experienced her first convulsion which was attributed to high intracranial pressure. Her medication was altered and she has once again regained stability. However, an MRI scan revealed she had suffered a brain injury which has caused mobility issues in her left foot. She now receives weekly physiotherapy. Since Gabriela’s diagnosis, our lives have changed dramatically. I’ve had to deal with depression, have given up work and my husband, Biel, now runs my business. Right now, I’m focused on Gabriela. If she has a good day, I’m happy and if she has a bad day, I get really worried. We try and appreciate every day and take it one day at a time. Our hope is that one day there will be a treatment - that hope makes us stronger.

Francesca
London, UK

Hi, I’m Franki, I’m 14 years old and I live with CPA, which means I sometimes have to deal with things like TIAs and other side effects. It can be hard and unpredictable, but it’s just part of my life and it doesn’t define who I am. I still have fun and live a full and happy life, just in my own way.

As I’ve got older, I really like being more involved with the charity and helping to raise awareness. CPA is rare, and if sharing my story helps someone else feel less alone or more understood, then that really matters to me. I try not to let CPA hold me back; it’s only one part of who I am, not the whole story.

Lesley and Ryan
Ohio, USA

My name is Lesley and this is my son, Ryan. Ryan was diagnosed with CPA in October 2017, aged 15. He had a headache that became so intense his vision became blurry. We took him to hospital where they discovered he’d had a brain bleed. At first the neurologists thought it was an AVM - however, later determined it was CPA. They successfully repaired the ruptures. Over the last four years we’ve had several emergency trips to hospital, and in May 2020 he suffered another bleed. There were no seizures and the rupture was able to heal itself as the swelling decreased. Ryan is conservatively managed and meets with his medical team and has MRI scans every six months. He is not allowed to participate in physical education and he has issues with his peripheral vision. He takes medication for his migraines, which is what he suffers with the most. Life is tough, but it could be much worse. Ryan is very scared, and calls CPA a “death sentence”. As a senior in high school, it has been hard for him to look to the future. He has missed so much school and can’t decide on college or a career. I can’t imagine what he’s thinking, and I’m also very scared myself. I cherish everyday with my son! We pray that CPA Research Foundation will raise awareness and our hope is that one day there will be a cure for Ryan.