Beating the Odds: My Journey with DADA2 and Brain Aneurysms — Now Living Happily

I am Santosh Kumari, 55 years old. In May 2022, I was diagnosed with DADA2 — a rare and complex condition that would reshape my understanding of my own health. But my story begins a little earlier, in 2021, with a discovery that quite literally changed my life.

In 2021, I was accidentally diagnosed with bilateral internal carotid artery (ICA) aneurysms — discovered incidentally during someone else's thesis work. What could have gone unnoticed for years was suddenly front and centre. I was referred to neurosurgeon Dr. Ashish Agarwal, who guided me with great care and clarity through what lay ahead.

In November 2021, the left-side aneurysm was treated with a coiling procedure, performed by Radiologist Dr. Chirag, Dr. Ajay Kumar, and neurosurgeon Dr. Ashish Agarwal. The team worked together with precision and dedication, and the procedure went well.

In March 2022, a flow diverter was placed on the right side — another critical intervention to protect my brain and reduce the risk of rupture. Each step felt like a battle, but also a victory.

Then in April 2022, I experienced temporary slurred speech — a frightening symptom that underlined just how serious my condition was. It resolved, but it led to the next important chapter: in May 2022, Dr. Aman diagnosed me with DADA2 (Deficiency of Adenosine Deaminase 2), a rare monogenic vasculitis. He started me on injections of Adalimumab every two weeks.

Since then, I have had some mild symptoms from time to time, but they are manageable. I have learned to listen to my body, to rest when I need to, and to trust in the care of my medical team.

Today, I am happy. It has been a long road — full of procedures, diagnoses, and uncertainty — but I am here, living fully, and grateful for every day. I hope my story gives courage to others who may be at the beginning of their own journey. You are not alone, and things can get better.