One Kiwis Dream for HHT Awareness

Tamara B & Shan

My first time learning about HHT was in 2016 when I was diagnosed with the disease at the young age of 43. I had suffered a fall from my horse that landed me at the Wellington Orthopedics Ward in New Zealand. During my admission, I was seen by a specialist, who had attended a seminar on a rare disease called HHT–just two days prior. He noticed I had ‘red spots’ on my skin, lips and inside my mouth and asked me if I had nosebleeds, shortness of breath on exercising, migraines, fatigue and/or anemia. Everything that he mentioned, I did in fact experience while growing up and continued to display into adulthood. I underwent an MRI and chest CT scan which confirmed his theory that I had HHT. I had evidence of arteriovenous malformations in my brain and lungs.

After recovering from my fall, I had a blood test done for genetic screening; however, no known mutation of HHT could be found in my blood, rather it was the MRI and CT scans that were able to give me a confirmed diagnosis of HHT.

Since 2017, I have had a brain aneurysm stented and coiled, a lung shunt coiled, a cyst removed from my colon due to GI bleeding, bowel cancer removed, more than 5 blood transfusions and several iron infusions—all as a result of HHT.

Unfortunately, in New Zealand, there are no HHT Centers of Excellence or HHT specialists.  The emergency room crews are also not fully aware of nor completely understand the complex nature of HHT, making the management of my symptoms very hard and stressful.  My HHT journey has been a difficult one due to the lack of proper treatment and awareness by the medical community.

I’m very passionate about bringing Awareness about HHT to both New Zealand and around the world. This June, for HHT Awareness Month, I joined the Cure HHT Strides for Strength–Virtual Walk to help spread Awareness here in New Zealand. I want to help educate medical practitioners and the public about the serious nature of HHT so that others can be properly diagnosed and managed appropriately before it’s too late.

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