KTS

I have been privileged to become a part of a yahoo group for families affected by KTS., as well as some other similar diseases.

One dear mom shared this you tube video. Michael has been so brave to share his story. It is the best explanation of KTS that I have seen, but is somewhat graphic. Thank you, Michael and family, for being so real and honest.

We are so thankful that Quynh's disease has not seemed to affect her internal organs as it did for Michael, but the presentation of their cases is similar. We admire him and wish him the very best.

It again AMAZES me that Quynh has almost zero complications from this disease, and rarely ever seems to experience pain or discomfort. When she does, it is easily relieved with OTC helpers. We are also blessed that she has never had an infection related to KTS.


I want to add these comments from the mom that shared this video with our yahoo group...

A few weeks ago there was a special on National Geographic about Michael, a 16
year old with Klippel Trenaunay Syndrome. Below are the links to the U-Tube of
his story. I am a member of the k-t.org support group and wanted to share this
here as well. Let me warn you, Michael's is an extreme case and is a little
graphic.





Thank you to Michael and his family, and for the networking of people who care...so that we can all learn more about this rare disease and how we can help each other. If you choose not to see the video (which is absolutely ok), please join in lifting a prayer for Michael and his family. I admire them much!

blessed, Carol