One of the Many Faces of HHT

I’ve recommitted to writing my monthly blog with a focus on HHT awareness, being newly diagnosed with HHT and ultimately living with HHT.  This month, I wanted to focus on the many faces of HHT, starting with my own.

HHT does not discriminate against race, age, gender, weight, ethnicity, nationality or any other characteristic known to human kind. It is nothing short of a terrible rare disease, with no cure, genetically passed down from generation to generation, often unknown and undiagnosed, or spontaneously born into a new generation unaware of its existence.

It often takes an awful incident to bring awareness to a family…the loss of a loved one for example. My family falls within this category. October 2015 we lost our beautiful, vibrant, loving Aunt to HHT at the young age of 47. For her, her HHT diagnosis came too late and it eventually led to PH (Pulmonary Hypertension), and her passing.

She had been diagnosed with asthma most of her adult life, no second thought given to a rare disease such as HHT. Once diagnosed with HHT, it was a mere two years before she lost her battle. It took her passing to bring awareness to our family, and to make it our mission to bring awareness to others, to the world.

Since my Aunts’ passing, her youngest daughter has been genetically tested and diagnosed with HHT. My mother has been clinically diagnosed along with her older sister, one of my sisters and my little nephew. It has plagued our family and yet it has reminded us how important early diagnosis is in the hopes of living a full and happy life while managing HHT, adhering to guidelines for screening and establishing a medical team specializing in HHT and is affiliated with an HHT Center of Excellence.

If you’re reading my blog, the take-away message I want to pass on is to get tested, if you haven’t already done so, and have all of your loved ones tested. Don’t let an awful incident happen to your family, as it did to mine, before you react and do something about it.

Don’t wait until tomorrow, do it today. You are here in this moment today, tomorrow is not guaranteed. We are only given one life to live, and only one body – treat it well in the hopes it will treat you well too. Above all, keep the faith and hope that one day soon, perhaps not in my lifetime or yours, but hopefully in our children’s lifetimes, a cure will be found. I have faith… I have hope…

I have HHT, HHT does not have me!

8 Comments

  1. Joy Nock on April 17, 2017 at 11:58 pm

    Did she try any treatment for PHT? I just found out my PA pressure is near 70.
    I am 50. I am also a nurse so be honest.

    Thanks!

    • Tania on June 1, 2017 at 3:04 pm

      Hi Joy. My Aunt was receiving treatment for PH for the last 2 years of her life. She would carry around with her a portable medicine dispenser, where medicine was administered 24/7. It took a toll on her body. She was administered to the Hospital with a severe bleed, where one complication kept leading to another. She spent her last month of her life in that hospital, where she eventually passed away. Se never returned home… I pray that treatments work for you. My Aunt was diagnosed with HHT late in life, in her 40’s and almost immediately it led to PH. Time wasn’t on our side… Sending prayers…

  2. Ken Howe on April 18, 2017 at 6:35 am

    i lost my Mother to HHT in May 88. CureHHT didn’t exist then. Her Hematologist tried to get her seen at UC Davis but was turned down. They said they didn’t even study it as to few had it, it wasn’t cost effective. Tania is 100% correct, get tested, especially if you have regular Nose Bleeds, mild or severe.
    I have been diagnosed myself and am currently receiving 2 Iron Infusions a month threw the SFVA and have been seen at the HHT Center of Excellence, UCSF .

    • Tania on June 1, 2017 at 2:59 pm

      Sending prayers Ken… we must keep raising HHT awareness and keep fighting for a cure to be found!!

  3. Anne on April 18, 2017 at 11:25 am

    Reading your article could be reading my own life. Just lost my 47 year old sister in August. I’d like to read your blog. How do I get access to it? Best wishes to you and your family.

    • Tania on June 1, 2017 at 2:56 pm

      Hi Anne. I am so sorry to ear about the passing of your sister… So young at 47… It’s just not fair…. 🙁 Thank you for reading my blog. Feel free to reach out to me via FaceBook. I write for Cure HHT once a month. It’s typically launched mid month. I’m working on my June blog now. Sending prayers….

  4. Stacey l Lawler-Hentosh on May 4, 2017 at 4:11 pm

    My mom, myself, and oldest daughter all have HHT. My mom was diagnosed when there was barely any information on it. I was diagnosed at 18and my oldest daughter was diagnosed at 12. Still so many doctors have no idea what HHT is. It’s bad one you have to tell drs to google it. This is a daily battle for me I have avms in small intestine, I have so many bleeding avms in my lungs that I can barely do simple tasks without losing my breath, I also have avms in my brain!! I will like no one understands any of this or how bad it is or how hard it is. I am blessed with the best hematologist ever!!

    • Tania on June 1, 2017 at 2:51 pm

      Hi Stacey! I am sorry your family is also going through the daily struggles of living with HHT. Praying for us all. Keep the faith, kepe pushing forward… we will find a cure someday!!!!

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