AU & Heart Block | HairLossTalk Forums
Dismiss Notice
Forum Update: Aug 19. Feedback for the Admin? Upgrade coming: Click Here.

AU & Heart Block

Discussion in 'Alopecia Totalis and Universalis Support' started by looking4answers, Oct 19, 2009.

  1. looking4answers

    looking4answers New Member

    Joined:
    Oct 19, 2009
    Messages:
    3
    Likes Received:
    0
    Dislikes Received:
    0
    Hello,

    My name is Kelly. My daughter, Vanna, started loosing her hair when she was 9 yrs old, she is now 15. At first I noticed big chunks of hair coming out when I helped her brush. We went to her pediatrician immediately & all blood tests were normal. They couldn't figure it out. Within 6 months she had lost all her hair, eyebrows, eye lashes, arm & leg hair - she had no hair on her body at all. Another strange thing is that she was diagnosed with a 2nd degree heart block 2 months after she started loosing her hair. We were referred to a pediatric Dermatologist, Endocrinologist, Rhumatologist & cardiologist all in a 6 month period. All the tests that were run by Endo & Rhuma were negative. We were told she had no autoimmune disease. She was started on Orapred by the Dermatologist. She had minimal regrowth but the side effects of the med turned her into a bear & they really didn't want her on the med for too long because of her heart anyway so we stopped the Orapred. We tried topical creams with little effectiveness.

    Vanna has been without any hair now for 5 yrs & her heart is maintaining - no worse & no better. I was wondering if anyone had any idea's?? Where do we go from here? Does anyone else have both alopecia & heart block?

    It breaks my heart to see my daughter struggle so much with her hair & trying to fit in at school. Any feedback would be greatly appreciated.
     
  2. tonyj

    tonyj Established Member

    Joined:
    Oct 19, 2009
    Messages:
    83
    Likes Received:
    2
    Dislikes Received:
    1
    Anybody in your family or husband's family have celiac disease or are gluten sensitive or intolerant?
     
  3. looking4answers

    looking4answers New Member

    Joined:
    Oct 19, 2009
    Messages:
    3
    Likes Received:
    0
    Dislikes Received:
    0
    My Aunt has celiac dx. They tested another of my daughters for celiac due to GI related issues but she was negative. I guess that means she could have a sensativity to gluten. How does this apply? Is there some connection between celiac & AU/heart block??
     
  4. Ian Ashton

    Ian Ashton New Member

    Joined:
    Apr 13, 2011
    Messages:
    1
    Likes Received:
    0
    Dislikes Received:
    0
    May be a coincidence but my son was diagosed with complete heart block in the left ventricle when he was very young. He had a pacemaker implanted when he was 14 months old. His hair started falling out about 18 months ago. He has AU and is 28 years old.
     
  5. looking4answers

    looking4answers New Member

    Joined:
    Oct 19, 2009
    Messages:
    3
    Likes Received:
    0
    Dislikes Received:
    0
    I wish your son well. It's not easy dealing with medical issues - it's tough on the child but often times is tougher on the parent who feels helpless. I'm not sure about your son but my daughter seems to deal better with her heart block than her hair loss - only because the hair loss is visible to others. She is a Junior in high school right now & sometimes kids can be so mean! It breaks my heart to see her hurt. As a teen - it seems alot of self worth is based on physical appearance - hair being a large part of that. It's difficult for her with self esteem issues.

    Anyway, it would be interesting to see just how many AU people also have Heart Block. Is it related some how. And more importantly - is there a way to prevent this in others or a cure for those aflicked already??

    Ahh - the unknowns . . .
     

Share This Page