Monday, June 11, 2012

HHT and Nosebleeds

I recently posted about June being HHT awareness month and how I hoped to share more with all of you.  So here we go!
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Kennedy was recently clinically diagnosed with HHT.  Here is what the doctors look at:

DIAGNOSIS
The clinical diagnosis of HHT is considered:
Definite when three or more of the criteria below are present
Possible or suspected when two of the criteria below are present
Unlikely when fewer than two of the criteria below are present
Diagnostic criteria for HHT:
  1. Nosebleeds(epistaxis): spontaneous and recurrent
  2. Telangiectases: multiple, at characteristic sites, including face, lips, oral cavity and fingers
  3. Visceral AVM (pulmonary, cerebral, hepatic, spinal) or gastrointestinal telangiectases (with or without bleeding)
  4. Family history: a first degree relative with HHT according to these criteria

Kennedy has #4 - Sam had HHT and I have HHT.  She has #2 - a few spots inside her mouth.  And she has #1 - luckily her nosebleeds have never been severe. But I do have the school nurse chart them so we can keep a record.  So, we did not do genetic testing for and myself and my father have never had it done either.  We are currently looking into genetic testing for Quinn and are waiting to hear from our insurance company.  Fun times, right?! 


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One of the most common symptoms of HHT is nosebleed.  In fact, 90% of HHT patients have recurrent nosebleeds.  Of those, 30% began seeing nosebleeds by age 10, and 80% by the age of 21.  I remember getting just a few nosebleeds as a kid.  My father had them much more often and they were much more severe.  There are some HHT patients who become anemic from the loss of blood through nosebleeds, some become transfusion dependent, many can't live a normal life due to crazy amounts of nosebleeds.  There are several treatments, but none of them seem to stop bleeding altogether. 

There is a nosebleed severity scoring tool that HHT Centers use to help determine possible treatments.  It is a scale of 1-10 and my score is 1.92.   If you would like to score your nosebleeds or those of someone you know, go to this site: Epistaxis Scoring Tool.  It takes a minute.  

Some treatment options are as follows:
  • Young's Procedure - closes the nasal cavity
  • Nasal Packing 
  • Laser Treatments - used to cauterize the vein
  • OTC ointments - to keep the nasal cavity lubricated
  • OTC nasal sprays - same as ointments
  • Septal Dermoplasty - replaces the nasal lining with thicker skin
  • Avastin - a drug that has just recently been used to help by slowing blood vessel growth
  • Hormone Therapy

If you or someone you know suffers from recurrent nosebleeds with HHT, there is a study going on to look at several of the treatments mentioned above.  If you would like to participate you can check out the info here: NOSE study.  

I feel very blessed that nosebleeds haven't been a horrible side effect for me.  And I pray that Kennedy's continue to be minimal.   

Hope you learned something new about HHT!!!!  Thanks for reading! 

 

 

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