Wednesday, April 13, 2011

Mothers for Ocular Melanosis Support (M.O.M.S.)

My friend Amy has the cutest nephew ever!  I want to grab him and kiss his little puffy cheeks right off! However, this post is not about his having the most kissable cheeks on the planet or the most stunning brown eyes I've ever seen on a baby. This is about something that lurks behind those eyes.

Ocular Melanosis

Sounds pretty ominous doesn't it?  What is Ocular Melanosis? It is a rare pigment disorder that could turn into glaucoma and in rare cases, melanoma of the eye.  You read that right, cancer of the eye. 
Ocular Melanosis is a rare defect of the eye that can either be congenital (present at birth) or acquired (happening later in life). Depending on the type, the outcome can vary greatly, from yearly monitoring by an opthamologist to enucleation (eye removal). In most cases the condition remains stable and nothing needs to be done, but in rare cases it has the potential to develop into melanoma, a form of cancer. This is most frequently seen in Primary Acquired Melanosis (PAM).

OM that is seen with bluish skin discolorations on the face and neck is known as Nevus of Ota, and is almost always seen in the Asian population. This form is less likely to develop into melanoma.

There is no treatment.  There is no cure.

When Amy's nephew was diagnosed, Amy's sister, Tracy, did what all concerned mom's do, she turned to Dr. Google to find out all she could about Ocular Melanosis.  She tried to find support groups for other parents going through what she was, yet she came up empty handed.

Knowing that her son would spend the rest of his life being monitored and that someday there was the very real chance that her son could become blind or worst case scenario lose his eye to cancer, made Tracy all the more eager to find someone, anyone else with whom she could find support, who knew what she was going through and who understood the fear that lives within her heart. 

Coming up empty handed, Tracy did what any one of us would have done.  She started a website to grow attention to what few people know is a real problem. 

Tracy created Mothers for Ocular Melanosis Support (M.O.M.S)

Please check out Tracy's site and let her know she is not alone.  If you know anyone who is dealing with Ocular Melanosis, please tell them about M.O.M.S. too.

1 comment:

Amy Lee said...

Thank you so much for posting this for me, my sister and my nephew Eric. I hope this can help spread the word!