What the HHT?

A Voice for the HHT Community

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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

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A New Year with Hope and Perseverance

By Janice Jones

Image result for 2017Happy New Year to the Cure HHT family, friends and supporters!

I’m going to drop a quick note as I’m preparing to depart and visit my new granddaughter and first grandchild in Alabama. I’m so blessed to be strong enough to travel. My daughter’s pregnancy and delivery was successful and there were no issues or developments with HHT.

Although she had one iron infusion at seven months of pregnancy, she has never been officially diagnosed with the disorder, but has always been watchful and kept up with genetic testing to ensure there are no developments or issues. Continue reading

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Real Talk From the Heart

By Janice Jones

janice-jones-3The past few months have been such a challenge and very difficult. At last check, my blood levels were an 8.7 and dropping. My iron saturation is below the lowest and I’m definitely not creating any hemoglobin (blood). I’m well aware that they have most likely dropped even more, and I need to verify this, but unfortunately, I just don’t want to deal with it.

As with anyone dealing with sickness and disease (dis ease-discomfort) from an ailment there is no cure for, the emotions and feelings can and often do become compromised.  There are days when I can’t stop thinking about how I’m going to get through the day and wonder about the effects all of this is having on my lungs, heart, brain, etc.

People tend to only think of the physical aspect of HHT; but mental and spiritual exhaustion is very prominent. Yes, I’ve been there, done that, and have recently visited that not too long ago! I don’t just want a few days to lay and vegetate, I literally want my mind to just STOP and forget there is a giant called HHT I face daily. Continue reading