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SDHB mutated gene

PeMa Message
17 Sep 2009, 11:03 AM

Any readers with the SDHB mutated gene? Or also known as SDHB genetic variant identified as (c.490C>T). Seeking others with the SDHB+.
Wendie Message
9 Jun 2011, 08:29 PM

I have this gene. My daughter, niece and brother all have the gene. I am the only one with the disease.
sarahp Message
3 Mar 2015, 03:46 AM

hello PeMa and wendie! are you still a part of this chat? i am newly diagnosed with SDHB . looking for others, being treated at NIH now after a radical nephrectomy about 8 mos ago. would love to talk to anyone else with this rare genetic thing!
mariom Message
18 Mar 2015, 02:34 PM

Hi sarahp, I have the gene and have had the disease too, and two of my kids have the gene. You are in good hands at the NIH with Dr Pacak's team.