Saturday, September 12, 2015

Paraganglioma Part 6: Brothers

After a round of appeals to our insurance company, we were finally approved for Marie, Joel and Will to have genetic testing of their SDHB gene to see if they have the same mutation as Sarah. We got a call last week with the results, but the official word came in the mail today between Will's morning soccer game and Joel's afternoon game.

You can read the results below. The summary is that Marie and Will (plus Sarah) have the SDHB mutation and Joel does not. Will was quite traumatized last Sunday when we told him. It is a big burden for a young boy to carry. One of his questions was "Why is Joel so lucky?" We have to keep reminding him that his mom and probably his grandma Tueller have the same mutation and yet have never had any tumors grow or any symptoms of paraganglioma or pheochromocytoma appear. We hope Will is so blessed. We plan to have blood work and an MRI done later this fall for Will so we can know if he is free from any tumors and to have a base line evaluation to monitor any future developments.

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