Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

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Thursday, March 25, 2010

Purpose of this Blog

The purpose of this blog is to help myself as well as others to understand aniridia. This is a very rare condition, and most people have never heard of it. Hopefully, through posts, comments and links we can all gain a better understanding of what aniridia is.

Here is what I've learned so far ......

Aniridia - congenital absence or partial absence of the iris. (http://www.aniridia.net/whatis.html) However, aniridia is more than just being born without an iris. (See below : Other issues with aniridia.)

How Common is Aniridia? - Aniridia occurs between 1 in 50,000 to 1 in 100,000.

What Causes Aniridia? - The genetic defect has been found to be a deletion of chromosome 11. It is believed that aniridia is not caused by anything that a parent does or does not do.

Other Issues With Aniridia - Aniridics may have any of the following issues, in addition to having no iris.

  • Wilms Tumor
  • Cataract
  • Glaucoma
  • Lens Dislocation
  • Nystagmus
  • Corneal Pannus
  • Foveal Dysplasia
  • Optic Nerve Hypoplasia

For more information on any of the above mentioned conditions, I recommend reviewing the Aniridia Foundation International website :
http://www.aniridia.net/infomenu.html

Treatments - We have not been advised of any specific treatments yet. I have learned that aniridics should wear sunglasses or have their eyes shaded from the sun. Aniridics must keep a regular schedule of appointments with opthalmologists. They must also receive an ultrasound of the abdomen for the first 5 or so years of life to be sure the Wilms Tumor has not developed.

Useful Links :

Aniridia Foundation International - http://www.aniridia.net/

Aniridia Network - http://www.aniridia.org/

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