I was born in 1982.

I had my first clinical diagnosis in 2013 and genetics’ confirmation in 2019.

My parents were tested in 2020 and they do not have the mutation causing my PVNH.

It’s hard to live with the condition.

At the moment, I do not have severe simptoms, but I can say I’m always ill. Always in pain, due to abdominal issues and trombosis these days.

I need to sleep a lot: 9 hours every day.

It started with seizures and a coma when I was 1 year’s old. Then, scoliosis and shoulders and knees subluxation. And thermoregulation problems, fatigue, muscular pain and back pain. I also have partial seizures as part of my rare and chronic disease.

It’s hard to take care of one self, doing monthly tests or clinic visits, but I am a psychiatrist and a medicali doctor, so it makes everything a bit easier.

I practice yoga, I am followed by a psychoterapist and a nutritionist. I have a lot of friends and I am used to being asked to explain how I feel and what I need.

I love nature, art, and traveling around the word when I’m feeling ok. I’m planning to have a child thanks to pre-implantation diagnosis.

💗💛💜💛💗 #PVNH #PVNHawareness #MarchOnPVNH #Epilepsy #EpilepsyAwareness #RareEpilepsy#Brain#Seizures #Seizureawareness

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