I was finally part of the 1%

This is a story that begins back in mid-summer of 2005, June 9th. Thirteen years ago, my brother, Robert, died from HHT (Hereditary Hemorrhagic Telangiectasia). HHT is a very rare and chronic blood vessel disease with little awareness and funding. Currently there is no cure for HHT.

An estimated 1.4 million people worldwide suffer from this disease, including Robert, 8 of my family members, and myself. Robert, however, was and will forever be an unfortunately special case: he had cerebral AVMs, arterio-venus malformations, in his brain. At the time, doctors confidently told my mother that the chances of him dying from cerebral AVMs were one in a million. Robert was one in a million. The day after my brother died, we saw images of his brain. The amount of AVMs made the scan light up like a Christmas tree.

In spring of 2010, everything felt like déjà vu. I remember the dead silence of the doctor’s office. The bright white walls with scans of my brain. The large dots scattered throughout my scans- representing my nightmare. The doctor quietly explained, “Sabrina has 3 cerebral AVMs. They also found four AVMs in her liver and a complex AVM in her left lung.” I’ll never forget my mother’s reaction. She asked the doctor about my chances…how many people live long with cerebral AVMs? We knew the answer within our own family: zero.

“Well…chances are hard to pinpoint. Cerebral AVMs are very rare. As of now, about… 1% of patients have multiple cerebral AVMs.”

In that moment, it felt as though the doctor had etched my name into my own gravestone. I was a part of the 1%, not the one concentrated with wealth, but the one with ticking time bombs throughout the brain. But, like my demeanor in this photo, I will not let my cerebral AVMs or any statistic stop me. The AVMs in my brain are a constant reminder that every day is a new opportunity to prove my strength, both physically and mentally.

Robert’s death was a stone tossed into a still pond; it created ripples in the medical field and within my own family. Two years later, there were conferences centered around his rare case. Today, the statistic has grown: about 5-10% of patients have been properly diagnosed with cerebral AVMs.

June is HHT Awareness Month. I want to be the agent to create even more awareness and change. Much progress has been made because of Robert’s abrupt and tragic fate and because of the mobilization and passion of HHT patients and allies. There is much work to be done, not just for HHT patients, but for patients who suffer in the dark from all disabilities and diseases that receive no federal funding towards a cure.

Roberto Antonio Vera: although June 9th is anniversary of your death, I want to celebrate life. On June 9th every year, I am reminded that your death was the reason I checked my own brain. Today, because of you, I am a survivor of HHT. I am 21 years old. I am at my dream school on a full ride as a Posse, Gates Millennium, HSF, and Coca-Cola Scholar. I will graduate in 2020 as a proud first generation Latina student, and I plan to go to law school. I hope you’re proud of the woman I am; with everything I do, I do it for you. #CureHHT

 

6 Comments

  1. Sara Palmer on June 25, 2019 at 4:25 pm

    Thank you for sharing your story of loss and resilience! Here’s to staying well and staying strong. We are in this together.

  2. Kathey McCoy on June 25, 2019 at 8:09 pm

    Thank you for sharing your family’s story My sincerest condolences upon the tragic death of your brother. Blessings to you that you continue to live a great life despite cerebral avm’s.

    My husband and 2 of my 3 sons have HHT. Fortunately, none have cerebral AVM’s though my husband and youngest son have had AVM’s in their lungs which have been treated several times. They are not as serious as Cerebral AVM’s thankfully though my son’s first treated AVM was the size of a softball.

    We need to spread information about HHT so a cure or fix can be found. Your story will help.

  3. Cassi on June 25, 2019 at 9:55 pm

    A beautiful story, Sabrina. I know your brother is proud of you – I am too! Thank you for your testimony and advocacy.

  4. Mary Zayas on June 26, 2019 at 12:23 am

    This indeed was an interesting & informative article of HHT. Robert was very dear to our family and we were neighbors. I am Lynette‘s mother and remember Robert as a young kid always after my Edwin. We love your family and wish you the best in your career. I am really happy and congratulate you for this article, and for keeping up the spirit of your brother. I wish you all the best and the college that you have selected and we know that you will make it. love you Mary Zayas

  5. Kath on June 26, 2019 at 10:07 am

    Thank you for sharing. Blessings to you ever day.

  6. Alexandra Myles on June 26, 2019 at 10:33 pm

    Sabrina, you have transformed your pain into education and hope.
    You inspire all of us who live with HHT.🥰

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