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.

6 Comments

  1. Stephanie Walton on March 4, 2021 at 12:19 am

    I have HHT. More than half of my family does.
    I’d love to have a chat with you. I live close to Westport, Buller.

  2. Lee Bisset on October 16, 2021 at 2:36 am

    Hi Tam and Stephanie
    I also have HHT as does my brother and sister. For me it has meant GI bleeding with 2 operations to remove the bleeding vessels in my stomach and severe nose bleeds. I would like to share information on medical staff who are familiar with HHT. Paul Simcock at Auckland Hospital did 2 Yag laser treatments to my nose but he has long retired.
    I’m in the Coromandel.
    You can find me on Facebook

    Lee Bisset

  3. Kath Mahy on June 1, 2022 at 3:13 pm

    Hi, ladies, my family also has HHT and would love to connect. I am in Christchurch.

  4. Angela Thomson on August 24, 2022 at 6:15 pm

    Hi there
    My HHT (genetically informed) can be traced back from my paternal Great grandfather (who died of complications of HHT), my paternal grandmother and then my father. I am the only one of my siblings to have inherited HHT but 4 of my children have it also. I would be keen to connect with other kiwis as medical knowledge is still so limited. I live in the Bay of Plenty.

    • Debbie Fielder on October 16, 2022 at 2:04 am

      My husband has HHT and suffers badly from nosebleeds. He was also under Paul Simcock but now seems to be being bounced around the health system. It is a very frustrating experience for me in a support role . I hate to think what it is like for him! I would love to connect with fellow kiwis.

  5. Tamara Bowker on October 16, 2022 at 3:57 am

    Hi all, thanks for the comments and sharing some of your family stories. If you or your family are from New Zealand and want to connect with others then PLease feel free to join our facebook group HHT New Zealand. https://www.facebook.com/groups/542078272843891

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