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webinar series episode 13

We Have a Genetic Mutation, Addressing Family Dynamics
special thanks to progenics for making this webinar series possible through an educational grant.

The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.

Download slides here.

See list of questions and video timing below.

38:29: Is it recommended for everyone who has been diagnosed with a pheo or para to undergo genetic testing?

39:24: What advice can you give to significant other when I have a genetic mutation and how can I best support them?

41:04: I have SDHB VUS mutation what are the odds my offspring may carry it? Are SDHB VUS mutations common? Are they usually benign?

42:49: Is it possible to choose an embryo without the mutation to plan for a baby?

43:55: How much should you tell a teenager with depression when a mutation runs in the family?

46:03: Our son is 24 and has difficulty scheduling his annual tests by himself. I’m having trouble balancing being a protective parent in making sure he gets the scans that he needs on time, any advice?

47:58: Our son has SDHD inherited from his dad. If he gets a tumor will his symptoms be worse and is it likely he will get a tumor?

49:31: I have SDHA.  It seems that no one knows anything about it what can you tell me about it?

51:50: How can one deal with the frustration of siblings who deny an SDH mutation when they have symptoms? I don’t want to be a nag, but I’m concerned for them.

54:19: I come from a very large family, and I tested negative for all mutations, but I know it runs in my family . Many other members cannot afford to be tested. Any thoughts on that?

57:11: Can you give our listeners who have a genetic mutation that runs in their family a message of hope moving forward into the future?