Friday, June 1, 2012

HHT Awareness Month

 In the past on my blogs I have mentioned that I have HHT.  I have spoken about how Sam had HHT.  I have shared little tidbits here and there about HHT.  But it is time for me to begin sharing even more.  Being that this is HHT Awareness Month, I believe this is a fitting time! 

A few weeks ago I took my girls to a local doctor interested in treating children with HHT.  I have had a hunch for quite some time that Kennedy had HHT and figured it was time to know for sure.  Dr. McBride was fabulous...she is the FIRST doctor I have MET that actually has HHT and has children with HHT.  I can't tell you how comforting it was to actually meet with someone who knew what we were talking about!  She quickly diagnosed Kennedy with HHT, as I suspected.  I am looking into genetic testing for Quinn as she isn't showing any outward symptoms as of now. 

Over the course of the next month I will be sharing a bit about HHT and also personalize it for you by sharing how it has affected our family.  I hope you will read along!!  It may affect someone you know! 

First, I ask that you watch this video.....it is worth it!   My doctor, Dr. Chakinala, speaks in it...I will see him again in a few months!




The HHT Foundation's Awareness Campaign has 3 goals:
  1. Identify the 90% that are Undiagnosed - The more people hear about HHT - through word of mouth, watching a video, reading a post on Facebook, or researching nosebleeds on Google - the more people will be aware of the disease. This will ultimately lead to self-diagnosis, a visit to a medical professional, or a call to the HHT Foundation. These actions alone can potentially save a life!
  2. Educate Medical Professionals - According to a recent medical survey, most HHT patients experience an average of 11-14 years of misdiagnosis by Emergency Room physicians and Otolaryngologists (ENT) due to a general lack of knowledge about the disease. Awareness can lead physicians to seek information and training on how to diagnose, treat, and manage HHT which will ultimately increase the number of medical professionals  who are knowledgeable about HHT and make it easier for patients to receive proper care.
  3. Motivate the HHT Community -  We need HHT patients, physicians, and researchers to engage their families, local friends, Facebook friends, and co-workers in the fight to find a cure for HHT. The simplest thing you can do is send an email, which is already written for you, to your Congressional Representative. Although the Foundation has significantly advanced HHT in a variety of venues, we are only one voice - our message is so much stronger, louder, and impactingl when we all recite it together!

1 comment:

  1. Thanks for the video clip, it really helps me understand how to pray and gives me hope for your family. Thanks for sharing and keep it coming!

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