What the HHT?

A Voice for the HHT Community

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It’s All About Balance

By Tania Competiello 

Tania Competiello ProfileThis month, I’m spreading positivity! Focusing on me, and you, and how we should be taking better care of our overall well-being. Remember, you may have HHT, but HHT does not have you – it does not define you and all you aspire to be!

I’ll be the first to admit some days are easier than others, some days are harder than others. Then there are the days that seem as if nothing is going right, everything is going wrong and you don’t feel like fighting HHT, not today. Yet, you get up, you fight, you push with everything you have, and you survive because you are an HHT warrior!

Ask yourself…

What have you done lately to take care of you? Are you sleeping enough? Are you trying to eat healthier? Are you doing your best to exercise your body and mind as often as possible? Are you doing the things that make you happy? Are you spending time with your family? Are you appreciating every sweet moment you have with your little ones? Continue reading

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Blissfully Ignorant or Hyper-aware?

By Cassi Friday

OstrichDoes anyone else teeter between these two states of mind? My husband and I often discuss which is better – As the person with HHT, he would rather be more on the blissfully ignorant side. His symptoms are not very severe (no AVMs we know of, but a lot of nosebleeds), and his family rarely discusses their medical issues, if at all. As long as he is managing his own condition, he doesn’t like to read or hear about case studies, other people’s ailments or think about what-ifs.

I, on the other hand, want to know it all! Whether it’s about HHT, which affects him and our daughter, or about something going on with me personally.

My husband is plagued by the “ostrich effect.” That is, he would rather bury his head in the sand and go on with things. Whereas I am plagued with worry and compulsive research. Continue reading


One of the Many Faces of HHT

By Tania Competiello

Tania and Sister at Conference

Tania and her sister at the Masquerade Dinner of the HHT Patient Family Conference.

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. Continue reading

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Being Competitive & Knowing Your Limits

By Mariah Ray

Mariah Ray - track and fieldGrowing up, I was always in some sport. It began with t-ball, then transitioned into fast pitch softball where I was running back and forth from one field of play to another. In middle school, I had track right after school and then my mom would drive me to the next town over for softball practice. My summers were filled with camps for every sport imaginable and I almost never got a break.

That is how I wanted it though. I wanted to be out there with my teammates, striving to accomplish one common goal. Losing was always tough, but the feeling of not trying was even harder to grasp. For me, the ball was always in my court and if I wanted something bad enough, I was going to put in the work for it. This has gotten me to where I am today. Continue reading

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Little Eleanor’s First Center Visit

By Cassi Friday

Eleanor at WashU 2

Possibly the cutest person to ever wear a hospital gown.

Wow! What a week it has been! We just got back to Kansas from our trip to the Washington University HHT Center to have our daughter screened for cerebral AVMs.

A reminder for my friends and family who are reading along – an AVM is an arteriovenous malformation that can occur in the organs of patients who have HHT. These blood vessel malformations are susceptible to rupture, causing severe bleeding.

In this post, I will talk about how to initiate a pediatric screening, what happens along the way, what our experience was like experience, and highlight the HHT center for its excellent work.  Continue reading

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Here We Go Again: Follow-Up for a HHT Patient

By Janice Jones

I’m starting all over again with the poking and the long needles, and the fasting before blood work is taken, and the MRAs, MRIs and CTs with and without contrast, and so on and so on and so on…

Unfortunately, this is the life of a person who deals with HHT. Regardless of how I might be feeling, it is crucial I follow-up annually with tests that are consistent and thorough to ensure arteriovenous malformations (AVM) aren’t forming in my lung, liver or brain.

This is quite demanding, even more so since I have had a lobectomy due to an AVM that had blocked oxygen and blood flow in the middle lobe of my lung. Therefore, thorough follow-up and follow-through is pertinent. Continue reading


Cancer, HHT and Avastin: What’s the Connection?

By Cassi Friday

avastinOne of the things I love about Cure HHT is the focus on research and clinical trials for patients. I’d like to use this post to talk about the Avastin clinical trial, which I recently saw posted on Cure HHT’s media pages.

Before delving into the background on this drug and its potential benefits to HHT patients, let me put out a disclaimer. Please talk with your physician if you think you may benefit from participating in a clinical trial. I am not a physician, nor am I a practicing medical professional. I am a scientific researcher and this post serves the purpose to summarize information about Avastin and its potential uses for the HHT community.

If you search for bevacizumab, or its brand name, Avastin, you’ll see it’s an FDA approved drug given to cancer patients to help minimize tumor growth. Your first thoughts may be ‘I don’t have cancer. Why should I try to take a cancer drug to stop my nose bleeds? Cancer drugs are harsh and scary!’ Continue reading