Hi, my name is Jolina Jian, and I founded ProjectPatho.

I have beta-thalassemia, a type of microcytic anemia caused by a deletion in the HBB gene, which affects hemoglobin production. When my first blood tests came out, my mom was devastated to hear that I had inherited this disorder from her. My mom came from a poor family.  Her malnutrition made her weak throughout her childhood, and she would faint whenever she stood for too long or exercised. 

Growing up, I’ve been constantly warned by her stories. I try to maintain a balanced diet and avoid intense exercise. Still, whenever I stand up after sitting for a long time, darkness creeps in across my vision, and everything turns black for a second. At the same time, a wave of dizziness hits me, and I have to steady myself and wait until the world stops spinning.

Even so, I'm incredibly grateful only to have a minor version of beta-thalassemia. What I experience is nothing compared to what many others face around the world..

But it wasn’t just my story that inspired me to take action. In May 2024, my cousin passed away from suffocation after a tonic-clonic seizure. He had been under a lot of stress studying for college entrance exams over the past month, leading to seizures that were increasing in frequency. When I found out about this devastating news a few months later, the shock hit me pretty hard. I wanted to make sure my cousin’s story, and the stories of people around the world, wouldn’t be forgotten.

I founded ProjectPatho to raise awareness for rare and commonly misunderstood diseases, to reduce stigma around medical conditions, and to help others learn what they can do to support people in their communities.