What the HHT?

A Voice for the HHT Community


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


When You Marry Into HHT

By Cassi Friday
fridayfamilyGreetings, new friends! My name is Cassi Friday and although I married into HHT, this disease has a strong hold on my life. I hope I can contribute to this wonderful blog from the perspective of a wife, mother, scientist and advocate for my loved ones with HHT.

I am a medical researcher with a background in pediatric cardiology and obesity. As a scientist and lifelong student, I want to know as much as possible about the disease that affects my husband, his family and now our 7-month-old daughter. What is the penetrance? What is the incidence of cerebral AVMs? What is the standard of care for pediatric screening?

As a mother and wife, I also want to know as much as possible about this disease from a different point of view. How do we tell our daughter about HHT? Why do we have to keep explaining this disease over and over to our physicians? How do I get blood stains out of the carpet? (Seriously, comment your best tips for carpet stains and getting blood off the walls without taking the paint!) Continue reading

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Asking for Help Can Save Your Life

By Mariah Ray

mariah-ray-hospitalI had just gotten back from my best friends house. My eyes were red and puffy, and I tried to hide them behind my hand as I ran into my house and down the stairs. The questions to follow if my parents had seen me upset would only make me feel worse. At times like these, I just wanted to be left alone to think about what the future did or did not hold in store for me.

Since finding out I had HHT six years ago and overcoming some of the conditions it can cause, my mental health has grown significantly. I can now think about my condition without feeling completely hopeless and alone. My road getting here has been a long one, however. There were nights on end when I locked myself in my room and cried until I fell asleep and days I walked around school like a ghost with no emotions to hold me down.

I felt weightless and empty. The more I tried to have my case be known, the more rumors and backlash I received. I got to the point where I wouldn’t even speak to my parents or sister about what I was feeling because I figured there was no way they could possibly understand. Continue reading