Stories about: Caregivers

What can I do if there is no approved treatment for my child’s rare disease?

Just one tough question of many asked — and answered — during a social media Q+A held in observation of this year’s Rare Disease Day on February 28. Rare disease specialists, patients and advocates from across the country took to Twitter to offer their firsthand advice for dealing with a newly-diagnosed (or undiagnosable) rare disease. 

If your or your child’s rare disease does not yet have a treatment option, you can get involved in natural history research…

Over Twitter, our story headline and other questions were posed by the National Organization for Rare Disorders (NORD) and The Mighty, a digital health community that empowers and connects people who are facing disease or disability. Dr. Phillip Pearl, who directs Epilepsy and Clinical Neurophysiology and studies inherited metabolic epilepsies at Boston Children’s Hospital, offered his recommendations through a series of tweets from the @BostonChildrens Twitter account.

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Inflammatory bowel disease: 6 tips for a new school year

A new school year presents a lot of new opportunities like new teachers, new subjects and the possibility of new friends. But that newness also comes with a good degree of uncertainty, which can be frightening for a student with a chronic illness, such as Crohn’s disease or ulcerative colitis, collectively known as inflammatory bowel disease (IBD). That anxiety can be especially strong if the diagnosis is new, and the upcoming school year will be your child’s first with IBD.

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Journeys to excellence: Stories of three award-winning nurses

Cassandra is a nurse at Boston Children's Hospital.
Cassandra Fleurentin

Every year, the New England Regional Black Nurses Association (NERBNA) recognizes nurses for their outstanding commitment to their profession and for going above and beyond in their designated specialty area. Read the stories of the three Boston Children’s Hospital nurses honored with this year’s Excellence in Nursing Awards.

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When nursing runs in the family

For some, being a nurse at Boston Children’s Hospital is a family affair. In this video, meet a few of the men and women who care for patients and families alongside their own siblings, parents, children and spouses:

  • Sisters-in-law Shanna Barker (MICU) and Kelly Wietecha (MICU)
  • Caitlin Dolan (Center for Inflammatory Bowel Disease) and her mother Kathy Waddicor (Adolescent Medicine)
  • Sisters Michelle Audain (MSICU) and Pascale Audain (MICU)
  • Pat Pratt (Nursing Director of Patient Services — Procedure Units) and her daughter Amy Sparrow (Center for Motility and Functional Disorders)
  • Paula Conrad (MICU) and her niece Emily O’Brien (Intermediate Care Program)
  • Jean Gouthro (General Medicine) and her niece Karin Gavin (General Medicine)
  • Twin sisters Julia Perkins (Enteral Tube Program) and Rosella Micalizzi (Colorectal and Pelvic Malformation Center)
  • Liz Sacco (CICU) and her mother Patricia Burke-Sacco (Day Surgery)
  • Sisters Megan Dube (Inpatient Gastroenterology) and Denise Currier (Intermediate Care Program)
  • Michael Greenlee (Cardiac ICU) and his wife Lisa Greenlee (Cardiac ICU)

Learn more about Nursing at Boston Children’s Hospital.

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