What the HHT?

A Voice for the HHT Community

Questions About My Questions

1 Comment

By Katie Mitchell

medical advocate

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There were so many questions I asked in 2011 when I found out I had HHT. Like many of you, I searched the internet and read every article I could find about HHT. I soon realized no two HHT patients are alike; not even patients with the same mutation or in the same family. I began to realize that information and knowledge is power. So, I kept researching.

Through my research, I determined the following things about HHT:

*Liver AVMs can lead to heart failure
*HHT patients can have liver, lung and brain AVMs
*HHT patients have a greater risk of iron deficiency
*HHT patients over the age of 50 are more likely to have GI bleeding
*Telangiectasia become more apparent on your hands, face and mouth in your 30s and 40s

Was all of this great news to learn? No, not really. But, I would remind myself that knowledge is power. So, I kept researching, learning and asking questions.

I learned quickly that not many of my friends or physicians had heard of HHT. So, I put together a list of important questions to ask doctors. 

* Have you heard of HHT?
* Do you have any other patients with HHT?
* What should I get scanned for first? The AVMs in my lungs, my brain or liver?
* How can you help with the blood loss I have from nosebleeds and GI bleeding?

HHT Centers North America mapI soon realized I had to find an HHT Center of Excellence – That was the most important decision I have made thus far in my journey with HHT.

HHT Center of Excellence is able to give you expertise in all of the different areas of HHT – AVMs, nosebleeds, GI bleeding. I was able to meet with an interventional radiologist as well as a hematologist.

Since I had done my research, and met with an interventional radiologist, ENT, pulmonologist and hematologist in my hometown before choosing an HHT Center of Excellence, I felt much more comfortable with the HHT physicians and their expertise in my disease and condition. I still continue to meet with my hematologist at the UNC Chapel Hill HHT Center of Excellence yearly as well as have periodic phone calls and emails throughout the year. I feel as though my physician takes an interest in me as a person and a patient.

As of today, there are 23 HHT centers in North America. If you have HHT and have not been to an HHT Center of Excellence, I cannot stress enough the importance of the care and love and concern you will receive from them. Find one today!

At an HHT Center of Excellence you will meet physicians and staff who are knowledgeable about HHT. They care for you! They want to help you with a specific plan that is right for you! A HHT Center of Excellence has physicians who educate you and work with you.

Information and knowledge is power. We are all on the same team, fighting for the same cause – A cure!

One thought on “Questions About My Questions

  1. So far we are very happy with the HHT Center of Excellence here in Milwaukee. Very organized with many professionals. We have learned a lot about the disease and they are treating all three of my children.

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