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Hot Topics of the Day are picked by experts to capture the latest information and publications on public health genomics and precision health for various diseases and health topics. Sources include published scientific literature, reviews, blogs and popular press articles.

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97 hot topic(s) found with the query "Real stories"

Real Stories from People Living with Hemophilia – Carrie
CDC, November 2021 Brand (Posted: Nov 14, 2021 6AM)

Carrie is no stranger to hemophilia. Her father has severe hemophilia B (factor IX [9] deficiency) and she grew up watching her father experience joint bleeds and receive treatment at the Hemophilia Treatment Center (HTC) at his local hospital and at home. “It was challenging, but as a child you don’t know any different. [Hemophilia] is your normal. This is what your dad does. I had a father who never was able to run and play with us, he was never able to kneel down and give us a bath when we were kids.”

Real Stories from People Living with Sickle Cell Disease: Rae Blaylark
CDC, November 2021 Brand (Posted: Nov 14, 2021 6AM)

Rae Blaylark is the founder and Executive Director of the Sickle Cell Foundation of Minnesota; a certified community health worker; a certified hemoglobinopathy (red blood cell disorders) counselor; and the sickle cell patient family health advocate at the local children’s hospital, but her first and most important role is as a mother of a young adult living with sickle cell disease (SCD).

My Inherited Condition Has Led to a Life and Career I Love
MA Lewis, ASCO Post, October 2020 (Posted: Oct 27, 2020 0PM)

My patients with endocrine tumors are preparing me for whatever the future might hold, and I feel privileged to be both patient and physician.

My Brother Died of Brain Cancer. 20 Years Later, I Had It, Too. I was told it didn’t run in families. Was it just chance?
S Hashmi, NY Times, October 20, 2020 (Posted: Oct 20, 2020 9AM)

Medical research is on their side. It shows there’s only a 5 percent chance of brain tumors being hereditary. My brother was the first among our eight uncles and aunts and 19 cousins, and now I’m the second.

“My disability has become an ability”
E Manna, Nature Medicine, August 24, 2020 (Posted: Aug 26, 2020 7AM)

I can feel that we are at a turning point. More and more, people living with medical conditions are beginning to realize that they do have a voice. This is fantastic, because if it were not for patients, everybody would be out of a job.

Real Stories: Living with Spina Bifida
CDC, 2019 Brand (Posted: Oct 22, 2019 9AM)

Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with spina bifida.

How I wish people talked about living with a BRCA mutation
E Stallings, Hello Giggles, June 26, 2019 (Posted: Jun 27, 2019 8AM)

When a Rare Mutation Causes a Rare Disease: Jacob’s Story
R Lewis, PLOS Blogs, June 20, 2019 (Posted: Jun 20, 2019 11AM)

'Out of the Blue' Diagnosis Linked to a Family History of Cancer Now Empowers Others
S Friedman, Cure, June 12, 2019 (Posted: Jun 13, 2019 1PM)

Avery Watts and family fighting for her heart
J Heim, HM Media, March, 2019 (Posted: Mar 22, 2019 10AM)

7 Things I Wish I Had Known About Being 'Rare'
K Moore, The Mighty, March 2019 (Posted: Mar 22, 2019 10AM)

Real Stories from People Living with Hemophilia
CDC, 2019 Brand (Posted: Mar 08, 2019 1PM)

I Got A Double Mastectomy After A Genetic Test. Then I Learned The Results Were Wrong.
M Boesen, Huffington Post, February 22, 2019 (Posted: Feb 24, 2019 1PM)

It took more than a decade to explain the sudden death of my precious teenage son
K Gardner, the Guardian, February 22, 2019 (Posted: Feb 24, 2019 1PM)

Ryan’s Story
The FH Foundation, February 14, 2019 (Posted: Feb 15, 2019 0PM)

I had Lynch syndrome for 30 hours
E Matloff, Forbes, February 12, 2019 (Posted: Feb 13, 2019 8AM)

Saving my family from the deadly consequences of familial hypercholesterolemia
The FH Foundation, YouTube 2019 (Posted: Jan 29, 2019 6PM)

One Couple’s Tireless Crusade to Stop a Genetic Killer
Wired, January 14, 2019 (Posted: Jan 16, 2019 9AM)

A father’s fight to help his sons — and fix clinical trials
D Adam, Nature, January 9, 2019 (Posted: Jan 10, 2019 8AM)

Reflecting on a New Year
S Seim, the FH Foundation, January 2019 (Posted: Jan 08, 2019 2PM)

Our child received a devastating diagnosis before she was born. We decided to protect her
A Chang, Stat News, January 7, 2019 (Posted: Jan 07, 2019 9AM)

Mom Opens Up About Life with Daughter Who Has Rare Genetic Disorder: 'She's a Happy Girl'
C Adams, People, January 3, 2019 (Posted: Jan 05, 2019 1PM)

Why I Wish I Hadn't Done Genetic Testing While I Was Pregnant
AE Murray, PopSugar, December 26, 2018 (Posted: Dec 30, 2018 9AM)

Lynch Syndrome and Death Anxiety
G Hurst, Cure today, December 11, 2018 (Posted: Dec 19, 2018 9AM)

Reconciling a Hereditary Cancer Diagnosis
G Hurst, Cure Magazine, November 5, 2018 (Posted: Nov 09, 2018 8AM)

Let's Talk Lynch: Rachel's story
YouTube video, September 2018 (Posted: Oct 25, 2018 9AM)

Personal Stories from the New Era of Patient Focused Advocacy
NORD, October 2018 (Posted: Oct 24, 2018 3PM)

Breast cancer survivor talks about BRCA
A Salinas, Fox 7, October 15, 2018 (Posted: Oct 16, 2018 2PM)

The Doctor And The Boy In The Bubble
S Simon, NPR, October 13, 2018 (Posted: Oct 13, 2018 3PM)

Hereditary angioedema: a mother diagnosing her child using Google as a diagnostic aid.
Srikantharajah Thanusha et al. BMJ case reports 2018 Oct 2018 (Posted: Oct 10, 2018 7AM)

My Father’s Fight Against the Breast-Cancer Gene- My grandmother and I both survived the disease, and knowing our genetic legacy turned out to be crucial in saving him
P Munster, WSJ, September 28, 2018 (Posted: Sep 28, 2018 1PM)

The Cost of Ovarian Cancer Prevention- Seven years ago, I was diagnosed with Lynch syndrome, a hereditary cancer condition which significantly increases my chances of developing early-onset cancer.
G Hurst, Cure Magazine, September 24, 2018 (Posted: Sep 26, 2018 9AM)

Raising Awareness of BRCA Mutations Genetic testing may help those at high risk take steps to prevent deadly cancers.
S Gubar, New York Times, September 20, 2018 (Posted: Sep 20, 2018 11AM)

She tried diet and exercise. But her high cholesterol came from her genes.
N Brown, American Heart Association, September 4, 2018 (Posted: Sep 04, 2018 0PM)

This Is How I Told People About My BRCA Diagnosis — And How They Responded
S Altshule, Bustle.com, AUgust 27, 2018 (Posted: Aug 29, 2018 0PM)

Local Woman Crusades Against a Hidden Killer Which Science Now Makes Easier to Detect- Pasadena Group touts early detection of a genetic mutation which turns out to be among the most common genetic causes of heart disease
B Day et al, Pasadena Now, AUgust 9, 2018 (Posted: Aug 10, 2018 9AM)

Familial Hypercholesterolemia: Shining Light on a Serious Genetic Condition
K Wilemon, US News, August 7, 2018 (Posted: Aug 08, 2018 8AM)

Years ago when my twin got breast cancer I took drastic action and am grateful I did
RO Selig, New Yorkt Times, May 2018 (Posted: Jul 25, 2018 8AM)

One woman’s race to defuse the genetic time bomb in her genes
A Regalado, Tech Review, July 23, 2018 (Posted: Jul 23, 2018 0PM)

The road to there
C Herrera, American Heart Blog, July 16, 2018 (Posted: Jul 20, 2018 10AM)

Genetic Testing: A Wake Up Call
S Seim, the FH foundation blog, July 12, 2018 (Posted: Jul 16, 2018 8AM)

From a Single Child to Uniform Newborn Screening: My Lucky Life in Pediatric Medical Genetics.
Howell R Rodney et al. Annual review of genomics and human genetics 2018 Mar (Posted: Jun 14, 2018 9AM)

Jeanette Erdmann PhD —Í
J Ozkan, Eur Heart J, June 7, 2018 (Posted: Jun 08, 2018 1PM)

Elizabeth's breast cancer treatment didn't get in the way of her life
MSKCC, June 2018 (Posted: Jun 03, 2018 2PM)

Colon Cancer Prevention Brings Father and Son Together
Dana Farber, May 2018 (Posted: May 28, 2018 10AM)

Our Journey and Destination
The FH Foundation, May 2018 (Posted: May 26, 2018 9AM)

p53 and Me.
Elmore Shekinah N C et al. The New England journal of medicine 2018 May (21) 1962-1963 (Posted: May 24, 2018 9AM)

Previvor: An Oncology Nurse's Story of Cancer Risk Reduction Through Genetic Testing.
Kelly Joanne et al. Clinical journal of oncology nursing 2018 Jun 22(3) 247-248 (Posted: May 23, 2018 9AM)

Angelina's impact: Advocates Share
My gene counsel, May 14, 2018 (Posted: May 14, 2018 4PM)

A “Prime Example” of How Stroke Can Happen to Anyone
Brand (Posted: May 08, 2018 0PM)

How to Date When You’re Waiting for Cancer
JH Edelstein, The Cut, May 1, 2018 (Posted: May 01, 2018 3PM)

Journey from oncologist to cancer survivor and patient advocate in the era of precision medicine.
Needles Burton M et al. Cold Spring Harbor molecular case studies 2018 Apr 4(2) (Posted: Apr 04, 2018 11AM)

I have the scary cancer mutation. When should I have my breasts removed?
D Kunha, Washington Post, Mar 18, 2018 (Posted: Mar 22, 2018 9AM)

World Down Syndrome Day: 21 Things You May Not Know About Down Syndrome
Family blog post, Mar 21, 2018 (Posted: Mar 21, 2018 5PM)

Marleah’s Story
For Marleah, breast cancer at a young age runs in the family. Brand (Posted: Mar 20, 2018 2PM)

What is an inhibitor?
All people with hemophilia and VWD type 3 are at risk for developing an inhibitor ? an antibody ? to treatment used to stop or to prevent a bleeding episode: Anthony's story. Brand (Posted: Mar 20, 2018 2PM)

Living with multiple health problems: My Story
Kirsty, Genetic Alliance, Mar 19, 2018 (Posted: Mar 20, 2018 10AM)

Back On Her Feet After Five Surgeries
Ivanhoe Broadcast News, Feb 2018 (Posted: Mar 07, 2018 8AM)

TRAPPED - an insight into two sisters' struggle to access treatment for a rare genetic disease.
Al-Attar Mariam et al. Orphanet journal of rare diseases 2018 Feb 13(1) 37 (Posted: Feb 28, 2018 10AM)

Chris Bombardier: Reaching New Heights
He is the first person with hemophilia to summit Mount Everest, Hemaware, Feb 2018 (Posted: Feb 27, 2018 1PM)

Twin Sisters Share a Diagnosis — Tay-Sachs Disease — and a Desire to Make a Difference
Mayo Clinic Blog, Jan 2018 (Posted: Feb 19, 2018 1PM)

The Lloyd family: Three sisters, Mary, Sandra and Kerry Lloyd all developed breast cancer within 15 months of each other
Genomics England, 2018 (Posted: Feb 12, 2018 10AM)

'I am CardioSmart' Contest Honors Orange County Heart Attack Survivor
Am College Cardiology, Feb 8, 2018 (Posted: Feb 11, 2018 9AM)

Research matters: How a brother with Down syndrome inspired a PhD in tuberculosis and an ardor for science communication
M Wright, PLOS Pathogens, Feb 8, 2018 (Posted: Feb 08, 2018 6PM)

Real Stories: The Power of Personal Stories for Communicating Genomic Information
Brand (Posted: Feb 08, 2018 6PM)

Casey's Story – A Family History of Heart Disease
the FH Foundation, Jan 2018 (Posted: Feb 07, 2018 1PM)

It's Been Five Years Since My Diagnosis Of Breast Cancer And I'm Only Just Beginning To Move On If I live, I’ll be the first generation in the history of my family to have survived not just one, but two, cancer diagnoses
Huffington Post Blog, Feb 5, 2018 (Posted: Feb 06, 2018 9AM)

Fighting Genetic High Cholesterol: A Mother's Story: After a heart attack at only 38, Katherine Wilemon was inspired to start a foundation and help raise awareness.
MR Vann, Everyday Health (Posted: Jan 25, 2018 11AM)

Stories 'There's a 50% chance I've a fatal disease. Do I find out?'
BBC News, Jan 23, 2018 (Posted: Jan 24, 2018 8AM)

Twins take action: diagnosed with Tay-Sachs, sisters raise awareness to find treatment and a cure
S Rose, Mayo Clinic, Individualized Medicine Blog, Jan 2017 (Posted: Jan 21, 2018 9AM)

How Genetic Testing Guided My Breast Cancer Journey – To Eschewing Beef
R Lewis, PLOS Blogs, Jan 11, 2018 (Posted: Jan 11, 2018 11AM)

The CSER Program: Tiana’s Story
Hudson Alpha, Vimeo, 2018 (Posted: Jan 06, 2018 7AM)

Ohio Mom, 27, Diagnosed with Breast Cancer Months After Giving Birth Speaks Out: 'Be Proactive'
msn lifestyle, Jan 4, 2018 (Posted: Jan 05, 2018 7AM)

I Did Everything to Avoid Cancer…And It Still Got Me
CDC Blog, 2017 (Posted: Dec 30, 2017 8AM)

Breast Cancer Survivorship: Pam’s Story
CDC Blog Post, 2016 (Posted: Dec 30, 2017 8AM)

Sifting Through Stories to Find What’s Right for Me
JL Haidle, NSGC Blog, Dec 2017 (Posted: Dec 25, 2017 8AM)

Sharing a Story of Hope
NIH Director's Blog, Dec 19, 2017 (Posted: Dec 19, 2017 10AM)

Three strikes, then a home run: Paige’s path to a diagnosis
S Buckles, Mayo Clinic Individualized Medicine Blog, Dec 18, 2017 (Posted: Dec 19, 2017 9AM)

I Am Alive and Kickin: An Interview With Lynch Syndrome and Colon Cancer Survivor David Dubin
The Colon Cancer Podcast, Nov 2017 (Posted: Dec 16, 2017 8AM)

BRCA1+ carrier: Why I chose prophylactic surgery
J McCarthy, MD Anderson Blog, Dec 15, 2017 (Posted: Dec 16, 2017 7AM)

How the Undiagnosed Diseases Network helped solve my daughter’s medical mystery
H and B Reilly, Texas Children Hospital (Posted: Dec 04, 2017 2PM)

Over a 40-year career, this 'stubborn scientist' helped change the way we think about cancer and genetics
L Ramsey, Business Insider, Nov 16, 2017 (Posted: Nov 16, 2017 4PM)

These 14 Women Are Grateful for Their BRCA Diagnosis—Here’s Why
J Sinrich, Readers Digest, Nov 2017 (Posted: Nov 16, 2017 3PM)

How a genetic mutation made this cancer survivor her own best advocate
BS Finer, The Philadelphia Inquirer, October 2, 2017 (Posted: Oct 03, 2017 11AM)

These moms have the BRCA gene mutation. Here’s how it affects their parenting.
Washington Post, Sep 30, 2017 (Posted: Oct 01, 2017 9AM)

The power of shared experience: Empowering women to face their cancer risk
K Lopez, NSGC Blog Post, Sep 2017 (Posted: Sep 23, 2017 11AM)

Do What I Couldn’t…and Go Save Your Life
Amy B Shainman, June, 2017 (Posted: Jun 18, 2017 4PM)

A cancer legacy
J Couzin-Frankel, Science, January 29, 2016 (Posted: Jan 29, 2016 1PM)

My legacy to my daughters: BRCA and cancer?
L Goldin, January 25, 2016 (Posted: Jan 26, 2016 8AM)

How I Avoided Cancer 6 Times
D Hardesty Blog Post, My support 360, January 2016 (Posted: Jan 24, 2016 7PM)

Diagnostic impact of genetic testing in hypertrophic cardiomyopathy: The story of two families.
Lorca Rebeca et al. International journal of cardiology 2015 Dec 205161-162 (Posted: Jan 13, 2016 2PM)

Recommendations and Reality: What Personal Stories of Hereditary Cancer Can Tell Us
R Green Fisk, CDC Blog Post 2015 Brand (Posted: Jan 13, 2016 9AM)

Illusions of Certainty
C Keirns, Narrative Inquiry in BIoethics, Winter 2015 (Posted: Jan 13, 2016 9AM)

Whole Genome Sequencing Solved Our Family’s Genetic Mystery: Titin
S Foye, Narrative Inquiry in Bioethics, Winter 2015 (Posted: Jan 13, 2016 9AM)

Real Stories from Real Families Living with Birth Defects
Brand (Posted: Jan 06, 2016 5PM)

Real Stories from People living with Hemochromatosis
Brand (Posted: Dec 07, 2015 3PM)

Previvor Strong
Karen Malkin-Lazarovitz, Anti Cancer Club, April 2016 (Posted: Jan 01, 2014 0AM)


Disclaimer: Articles listed in Hot Topics of the Day are selected by Public Health Genomics Branch to provide current awareness of the scientific literature and news. Inclusion in the update does not necessarily represent the views of the Centers for Disease Control and Prevention nor does it imply endorsement of the article's methods or findings. CDC and DHHS assume no responsibility for the factual accuracy of the items presented. The selection, omission, or content of items does not imply any endorsement or other position taken by CDC or DHHS. Opinion, findings and conclusions expressed by the original authors of items included in the Clips, or persons quoted therein, are strictly their own and are in no way meant to represent the opinion or views of CDC or DHHS. References to publications, news sources, and non-CDC Websites are provided solely for informational purposes and do not imply endorsement by CDC or DHHS.
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