Patient Stories with Grey Genetics

Like millions of other Americans, Alicia Valladao did a DNA ancestry test when there was a sale, eager to learn more about her roots. Through the testing, she was surprised to learn that her biological father was not who she had thought he was. Alicia discusses the identity crisis and disenfranchised grief that followed, where and how she found support, and how this information has impacted her family relationships. Alicia has become active in Not Parent Expected, or NPE Groups, and is also currently writing a memoir.

Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

Links and Resources

Alicia’s story on the NPE Podcast

Description without hyperlink: DNAngels Facebook Group

DNA Surprise Support Facebook Group

NPE Only After The Discovery Facebook Group

Watershed DNA: Genetic counseling services focused on genealogy and ancestry.

A DNA Guide for Adoptees: addresses topics relevant to anyone doing a family search

Connect with Alicia on Social Media:

Alicia on Facebook

Alicia on Instagram: @notparentexpected

Alicia on Twitter: @npealicia

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page

Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

Patient Stories on Twitter: @GreyGeneticsPod

Patient Stories on Instagram: @patientstoriespodcast

Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

At 19, Terri Wingham learned that she had inherited a BRCA1 mutation from her father. At 23, she started an enhanced breast screening protocol, and at age 30 she was diagnosed with triple negative breast cancer. While she expected cancer to be awful, she didn’t expect Surviving cancer to be so difficult. Her struggle with depression and to find meaning and connection in this new phase of her life led her to found A Fresh Chapter—a non-profit organization that facilitates volunteer and leadership experiences to empower people impacted by cancer to reframe adversity and discover possibility and purpose in their lives.

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Links and Resources 

A Fresh Chapter

Terri’s story on Grey Genetics' Patient Stories page

Terri’s talk at Stanford Medicine X 2013

Man’s Search for Meaning on IndieBound.

Connect with A Fresh Chapter on Social Media:

On Twitter: @afreshchapter

On Instagram: @afreshchapter

On Facebook

On LinkedIn

Read other Patient Stories on the Grey Genetics Patient Stories Page. If you'd like to share your story on this page, email us at [email protected]. 

Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

Patient Stories on Twitter: @GreyGeneticsPod

Patient Stories on Instagram: @patientstoriespodcast

Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

Chelsea London Lloyd is an actress and comedian living in L.A. She holds a BA in theatre from USC. Growing up, her dad had ALS and her mom had breast cancer. Her mother’s breast cancer returned 17 years later at stage 4, which she has combated for the past three years. Chelsea interviews women with sick parents and features their stories on her blog, Daughters of Sick Parents. Next up is her podcast, DYING OF LAUGHTER, where she speaks with comedians who have a lost a parent. Email [email protected] to be the first to know when it’s released this fall!

Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

Links and Resources

Chelsea’s website

Chelsea’s blog: Daughters of Sick Parents

Follow Chelsea on Instagram: @_ChelsWhoElse_

Follow Daughters of Sick Parents on Instagram: @daughtersofsickparents

Check out other Patient Stories podcast episodes

Read other Patient Stories on the Grey Genetics Patient Stories Page

Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

Patient Stories on Twitter: @GreyGeneticsPod

Patient Stories on Instagram: @patientstoriespodcast

Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

When Erika was 7 years old, her mother was diagnosed with breast cancer; her mother was only 28 years old. At age 42, Erika’s mother was diagnosed with breast cancer for a second time and she was finally offered BRCA testing. Erika later learned that she also carried the same BRCA2 mutation and opted for a prophylactic bilateral mastectomy with reconstruction. After her own experience with genetic testing and the hard decisions that followed, Erika became motivated to advocate for other women facing the same situation, specifically young black women who are underserved by genetic counseling and testing. She writes and speaks often about her experience and is also the founding co-chair of the Young Leadership Council for the Basser Center for BRCA.

Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

Links and Resources

Erika’s website

A selection of Erika’s related writings:

“Genetic Counselors Of Color Tackle Racial, Ethnic Disparities In Health Care”

“Phantom Pains: Life after a double mastectomy”

“What No One Tells You About Your BRCA Mutation”

“This Is How the American Healthcare System Is Failing Black Women”

Connect with Erika on Social Media:

Erika on Twitter: @quidditch424

Erika on Instagram: @quidditch424

Related Grey Genetics News Corner blog posts:

ASBS recommends genetic testing for ALL women with breast cancer

NCCN Expands Genetic Testing Criteria to Include More Women with Breast Cancer

What Can 23andMe Results Tell You About Your Breast Cancer Risk?

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page

Do you want to support Patient Stories? You can now make a donation online!

Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

Patient Stories on Twitter: @GreyGeneticsPod

Patient Stories on Instagram: @patientstoriespodcast

Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern.

Today, between episodes of Patient Stories, we are sharing an episode with you from another podcast related to Genetics that we think some of our listeners may enjoy: DNA Today: A Genetics Podcast, hosted by genetic counseling student Kira Dineen. DNA Today informs you on what’s happening in the genetics world. 

In this episode, Kira interviews Eleanor about Grey Genetics, a telehealth company and the sponsor of Patient Stories. If you want to hear more about what we’re up to at Grey Genetics, listen to this episode! If you want to hear Kira interview other guests about current issues in genetics, check out her other episodes here.

You can find DNA Today on Twitter, Instagram, Facebook and iTunes.

Amy Byer Shainman, also known as the BRCA Responder, is a BRCA1 mutation carrier and previvor as well as a passionate patient advocate providing education and support for others with BRCA mutations and other hereditary cancer syndromes. Amy has appeared in numerous news articles and television segments sharing her story while stressing how important certified genetic counseling is in the genetic testing equation. She is the Executive Producer of the award winning BRCA documentary Pink & Blue: Colors of Hereditary Cancer, and an administrator of the Facebook Group BRCA Sisterhood, which has over 10,0000 members. She recently published a health and medical memoir, Resurrection Lily: The BRCA Gene, Hereditary Cancer, & Lifesaving Whispers from the Grandmother I Never Knew.

Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

Links and Resources

Amy’s website: BRCA Responder

Buy Resurrection Lily through Indiebound

Watch Pink and Blue: Colors of Hereditary Cancer through Google Play or iTunes.

Lady Parts The Film

Connect with Amy on Social Media:

Amy on Twitter: @BRCAResponder

BRCAResponder on Instagram: @brcaresponder

Amy on Facebook 

Amy on LinkedIn

Buy Pretty is What Changes through Indiebound

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page

Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

Patient Stories on Twitter: @GreyGeneticsPod

Patient Stories on Instagram: @patientstoriespodcast

Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

What Can 23andMe tell you about your breast cancer risk?

Cory and her two sisters were all born with Spinal Muscular Atrophy (SMA) Type II, a hereditary and progressive neuromuscular disorder. Although she has never walked, Cory has lived a full life: she enjoyed school; was an early adopter of online dating, where she met her husband; and has two healthy biological children. Cory is passionate about advocating for equal rights for those with disabilities, learning and teaching about motherhood from a wheelchair, and educating others on disability-life in general. She is a monthly blogger for the Colorado Springs Moms blog. Cory is also pleased that in 2018, SMA was added to the Recommended Uniform Screening Panel (RUSP) for newborns in the United States. With increasing treatment options available, early diagnosis and intervention are more important than ever.

Links and Resources

Cory’s blog post: View from a Wheelchair: Living in a World that Wasn’t Made for Me