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.
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.
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, my name is Francesca. I am nine years old and I have a CPA. Even though I have a CPA my life is still amazing. I don’t let it hold me back from doing what I want to do, even when I am having a transient ischemic attack (TIA). Even though it’s not nice to go through, I have found ways to get through it. I gave my CPA the name, ‘Gary’ and I make jokes about him and I have drawn pictures of him. I drew Gary in a boat surrounded by lots of water. This symbolizes the amount of water I have to drink when I am having a TIA to make him float away.
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.