themighty logo

Why I Traveled 2793 Miles to Seek Treatment for My AVM

Whether I am studying, going out with friends or sometimes even driving on the road, I will get sporadic nose bleeds that either come to a halt almost immediately or bleed continuously for over an hour. I have also noticed that the swelling and the redness on my face has spread which concerns me a lot.


On some days, my head throbs in pain because of the constant pounding of the AVM (arteriovenous malformation) on my face. Despite all the red flags, I still pushed forward and continued to neglect treatment, because I had no hope after all the unsuccessful treatments I’d received in the past. I began to get used to all of the symptoms I described above and lived with it. I didn’t let any of that affect my life.

One day, I spontaneously researched tremendously and found the Vascular Birthmarks Foundation, which I emailed and got in touch with the president. She connected me to a specialist to help me. The president explained that as part of the foundation, there is an annual Vascular Birthmarks Foundation Conference and Clinic which offers a rare opportunity for families to consult with several internationally- recognized medical experts gathered in one convenient location. She invited me to attend, and said she would waive the conference fee on top of paying for a night’s stay at the hotel.

I was ecstatic. I called my dad immediately and we believed this was too good to pass up. We immediately registered to attend the conference, booked our flight to a state we had never visited and made arrangements with school/work. I even missed my engineering midterm for this!

After so many years of believing this was a lost cause, I was very emotional when the doctor told me he could fix it. His knowledge and confidence in identifying my rare disease and knowing what steps to take next gave me a sense of renewal. He gave me hope. Right then and there, I knew the man standing in front of me was the one I have been looking for all my life.

I will be starting treatment with him this summer, which is extremely exciting as I will travel back to the city that never sleeps. I know it will be worth it in the end. I am extremely grateful and I feel so lucky. All I hope for is to be AVM-free one day.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via berdsigns.