by Catherine Calhoun

Created on: April 15, 2009

McCune-Albright Syndrome/Fibrous Dysplasia,

As explained by a parent.

My son was 4 years old and wearing Tigger pajamas when we learned that he has MAS/FD. I couldn't get to the computer fast enough and spent hours and days on the internet. Some of the information that I found was accurate but a lot of the information, even from reputable sources, was just wrong.

It's been over 2 years now that I've known about my son's MAS/FD. I consider it something along the lines of a serious chronic illness with a side of disability. I'm still scared, but I know that he probably won't lose his vision and hearing. I know also that his extensive bone disease will probably mean that he will always use a wheelchair, at the least for longer distances. It's important to keep in mind that MAS/FD is extremely variable with a wide spectrum of involvement (some children with MAS/FD go through life with very few medical issues while others have very serious medical complications).

We've worked hard to pull together a good medical team. We have lots of wonderful doctors who work very hard for our son. Sometimes it can be very challenging to coordinate care between specialists and to ensure that everyone communicates promptly. We've learned quickly that we are the best advocate for our son's medical care and usually fall into the role of medical team "leader" simply because no one doctor has the time or expertise to manage all of the details of our son's care.

We've tried to build a new "normal" life for our family. We acknowledge the challenges of MAS/FD but try not to let the work and worry consume us. I've put together this "explanation" in the hopes that it will provide you some practical information to better empower you along your path.

What is MAS/FD?

McCune-Albright syndrome (MAS) is a rare genetic non-inherited syndrome characterized by (1) bone disease (fibrous dysplasia, FD), (2) endocrine and other issues, and (3) caf-au-lait markings on the skin (described as "coast of Maine" in shape).

It is important to keep in mind with both endocrine and bone issues that you will typically know by age 5 if your child will have a significant endocrine issue and whether or not your child is likely to have disabling bone disease.

Studies show that kids living with MAS/FD grow up to be happy adults with well-adjusted lives, medical issues notwithstanding. These same studies show that parenting a child with MAS/FD is very challenging (being mom or dad to a kid with MAS/FD is very hard).

There is

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