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Rare and Complex Conditions

Cancer and Blood Diseases
Ewing’s Sarcoma: A Sentimental Look Back
01
Nov 2017
Ewing’s Sarcoma: A Sentimental Look Back
Samantha, a young adult Ewing's sarcoma survivor, looks back at her diagnosis, treatment & recovery. But what she's most excited about is the look forward.
By: Samantha Morrissey | 2
Heart Conditions
Adults with Congenital Heart Disease: Do You Struggle with Executive Functioning?
26
Oct 2017
Adults with Congenital Heart Disease: Do You Struggle with Executive Functioning?
If you're an adult with congenital heart disease, you are at-risk for having executive functioning issues. Answer these questions to assess your risk.
By: Christina Holbein, PhD | 1
Heart Conditions
Awareness Needed: Anomalous Aortic Origin of a Coronary Artery
12
Oct 2017
Awareness Needed: Anomalous Aortic Origin of a Coronary Artery
Anomalous aortic origin of a coronary artery is the second leading cause of sudden cardiac arrest in teens. Learn why more awareness is needed.
By: Thomas Kimball, MD | 6
Cancer and Blood Diseases
4 Must-Know Points About CAR T-Cell Therapy
10
Oct 2017
4 Must-Know Points About CAR T-Cell Therapy
CAR T-cell therapy could potentially offer a cure to kids with relapsed acute lymphocytic leukemia. Here’s what parents need to know about it:
By: Christine Phillips, MD | 6
Rare and Complex Conditions
Receiving a Serious Diagnosis for Your Child: How to Move Through It
29
Sep 2017
Receiving a Serious Diagnosis for Your Child: How to Move Through It
Receiving a serious diagnosis for your child can be heartbreaking. Read a social worker's six steps to help parents "move through" it.
By: Erin Hillman, LSW | 0
Food Allergies
Handy Checklist: Going to College with an Eosinophilic Gastrointestinal Disorder
20
Jul 2017
Handy Checklist: Going to College with an Eosinophilic Gastrointestinal Disorder
Because preparing for college with an eosinophilic gastrointestinal disorder can add complication to your search, here is a list of things to consider:
By: Nicole Zahka, PhD | 1
Rare and Complex Conditions
Boy with Hirschsprung Disease Accomplishes Nutrition Milestone
29
Jun 2017
Boy with Hirschsprung Disease Accomplishes Nutrition Milestone
Quinn, who has intestinal aganglionosis, the most severe form of Hirschsprung Disease, achieved a "window" of time without assistive nutrition modalities.
By: Emily Greenwell | 8
Healthy Living
Help Understanding Difficult-To-Treat Asthma
01
Jun 2017
Help Understanding Difficult-To-Treat Asthma
Some kids may have difficult-to-treat asthma, despite doing the right things, like taking medicines and reducing exposures to triggers. Read 5 reasons why.
By: Theresa Guilbert, MD | 0
Rare and Complex Conditions
Pushing for Progress in a Rare Eosinophilic Condition: Eosinophilic Gastritis
15
May 2017
Pushing for Progress in a Rare Eosinophilic Condition: Eosinophilic Gastritis
Eosinophilic gastritis is a rare type of eosinophilic gastrointestinal disorder. Patients may have a long, challenging journey to receive a diagnosis.
By: Julie Caldwell, PhD | 8
Rare and Complex Conditions
Handy Checklist: Playing Sports with Inflammatory Bowel Disease
28
Apr 2017
Handy Checklist: Playing Sports with Inflammatory Bowel Disease
Playing sports with inflammatory bowel disease (IBD) is possible. Here are 8 tips from a college athlete to keep in mind before, during and after a game.
By: Meghan Grable | 3
Rare and Complex Conditions
You Are Not Alone: 4 Tips for Kids and Teens with IBD
11
Apr 2017
You Are Not Alone: 4 Tips for Kids and Teens with IBD
Patients with IBD, or Crohn's and colitis, can face feelings of isolation, fear and embarrassment. Read one patient's tips to help manage them.
By: Owen Serey | 0
Rare and Complex Conditions
From Undiagnosed to Bohring-Opitz Syndrome: Finding Our Crew
06
Apr 2017
From Undiagnosed to Bohring-Opitz Syndrome: Finding Our Crew
It took Michelle 10 years to find a diagnosis for her daughter's ultra-rare condition, Bohring-Opitz Syndrome. Read why she's happy to find their "crew."
By: Michelle Doty | 1
Rare and Complex Conditions
Thoughts Before, During and After Mia’s Cleft Lip Surgical Repair
04
Apr 2017
Thoughts Before, During and After Mia’s Cleft Lip Surgical Repair
A family shares their cleft lip surgery story and their thoughts throughout the process. Read how they fell madly in love with their daughter's new smile.
By: Christen Kauffman | 2
Cancer and Blood Diseases
Boy with Acute Lymphoblastic Leukemia Signs with RedHawks
15
Mar 2017
Boy with Acute Lymphoblastic Leukemia Signs with RedHawks
Now in remission, 7-year-old with Philadelphia Chromosome-Positive Acute Lymphoblastic Leukemia (Ph+ ALL) signs letter of intent with the Miami RedHawks.
By: Abby Richardson | 0
Rare and Complex Conditions
09
Mar 2017
Rett Syndrome: A Mother’s Perspective and Advice
A mother shares what she has learned through her daughter's experience with Rett syndrome. Read her advice to other families.
By: Jody Rodriguez | 10
Rare and Complex Conditions
A Mother’s Wish for Kids Who Have Rare Disease
28
Feb 2017
A Mother’s Wish for Kids Who Have Rare Disease
Kids with rare disease deserve respect and a supportive community. Read the wishes one mother has for all kids with a rare disease.
By: Sara Bitter | 0
Rare and Complex Conditions
Handy Checklist: Going to College with IBD
27
Feb 2017
Handy Checklist: Going to College with IBD
Choosing a college can be particularly stressful for those with inflammatory bowel disease. To help, our IBD team compiled a going-to-college checklist.
By: Erin Holbrook | 0
Rare and Complex Conditions
When Idiopathic Scoliosis Threw Me For A Curve, I Swung Back
10
Jan 2017
When Idiopathic Scoliosis Threw Me For A Curve, I Swung Back
Following an idiopathic scoliosis diagnosis when she was 16 and subsequent surgeries, Jessie is back to living an active lifestyle, including barrel racing.
By: Jessie Ford Coots | 9
Heart Conditions
Having Adult Congenital Heart Disease Hasn’t Slowed Me Down
03
Jan 2017
Having Adult Congenital Heart Disease Hasn’t Slowed Me Down
Despite being born with a heart defect, this mom of three lives a fulfilling, active life. Read why she sees an adult congenital heart disease cardiologist.
By: Holly Lawson | 0
Fetal Conditions
5 Tips for Parents of a Premature Baby
29
Nov 2016
5 Tips for Parents of a Premature Baby
A premature birth can be a very emotional and stressful experience for parents. Read a mother's advice for how to cope while your baby is in the NICU.
By: Kori Morrison | 0
Rare and Complex Conditions
21
Nov 2016
Why I’m Hopeful: Promising Research For Kids with Intestinal Disorders
A mother is excited about new research that could potentially help her daughter, who has cystic fibrosis and short bowel syndrome (intestinal disorders).
By: Sarah Kaupp | 2
Rare and Complex Conditions
Perspective on Alternative IBD Diets
04
Nov 2016
Perspective on Alternative IBD Diets
More patient families have been asking about the role of alternative IBD diets. A gastroenterologist explains what they are and their effectiveness.
By: Phillip Minar, MD | 0
Rare and Complex Conditions
01
Nov 2016
Down Syndrome and Tracheal Rings: Lessons My Daughter Has Taught Me
My daughter, who has Down syndrome, complete tracheal rings and a laryngeal cleft, has taught me many lessons in her short life.
By: Tasha Barreda | 1
Fetal Conditions
“Spina” What? 10 Things to Know About Myelomeningocele
31
Oct 2016
“Spina” What? 10 Things to Know About Myelomeningocele
Myelomeningocele is a type of Spina Bifida that requires surgery. Read about one family's decision to undergo surgery prior to the birth of their daughter.
By: Megan Wright | 21

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