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When Kieran was first diagnosed with Wiskott-Aldrich Syndrome, Frank and I found it very frustrating that no one could tell us what Kieran's life would be like. We wanted a concrete outline of what he would suffer with and when. We wanted to be prepared.
But that isn't possible with this disorder. As I talked to other mothers of WAS boys, they verified the statement that the doctors had told us: every boy suffers differently. Some, like Kieran, will have severe eczema. Others will fight frequent infections. Others will bleed from minor bumps. Some may suffer from all of these... or from other problems as well as these. So why the web page? The vast majority of the information on Wiskott-Aldrich Syndrome that is available on the web is written for doctors or researchers rather than for family and friends. In contrast, we hope that by sharing Kieran's story, we might be able to illustrate this disorder in a non-clinical, personal way. We can't tell you what to expect, but we can show you that you're not alone. Vanessa & Frank |
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