跳转到主内容

非常抱歉,我们不完全支持您的浏览器。如果您可以选择,请升级到较新版本或使用 Mozilla Firefox、Microsoft Edge、Google Chrome 或 Safari 14 或更高版本。如果您无法进行此操作且需要支持,请将您的反馈发送给我们。

全新设计的官网为您带来全新体验,期待您的反馈(在新的选项卡/窗口中打开)

Elsevier
通过我们出版
Connect

Our journey with rare diseases gives even more meaning to my work at Elsevier

2023年7月21日

按 Joslyn Chaiprasert-Paguio

Joslyn and her daughter, Samantha (Photo © Krysten Ashlay Photography)

Working at Elsevier, I understand the importance of research and its crucial link to diagnosis and treatment for patients like my daughter.

As a parent, the moment you find out you’re expecting a child, an immediate sense of protection and love takes over you. That sensation increases the day you hold your child in your arms for the first time, and like many, I made a vow to my daughter that I will always love and protect her.

Three months into her life, Samantha became ill, and we immediately knew something was terribly wrong. Her medical team diagnosed her with Hirschsprung disease(在新的选项卡/窗口中打开), a birth defect in which nerves are missing from parts of the intestine. She was hospitalized for three months and underwent surgery to correct her intestine.

She was diagnosed with a second disorder at 18 months: Langerhans cell histiocytosis(在新的选项卡/窗口中打开) — a rare disease that can damage tissue or cause lesions to form in one or more places in the body. Due to its rarity, little is known about the symptoms and effects of this disorder.

Our road to remission has been long and at times very difficult because we simply did not know what to expect with her LCH condition.

“Elsevier’s Zebra campaign ensures that every disease, disorder, symptom and person matters in this world.”

Working at Elsevier, I understand the importance of research and its crucial link to diagnosis and treatment for patients like my daughter. It is also the main reason I decided to volunteer my daughter to participate in a clinical study to help other clinicians understand the disorder, its presentation and the side effects.

I am truly proud to work at Elsevier. My company recently launched a campaign in partnership with Osmosis(在新的选项卡/窗口中打开): The Year of the Zebra(在新的选项卡/窗口中打开) is an initiative to drive more awareness and support for rare diseases in the healthcare community.

As a parent, I am thankful that Elsevier is taking a leading role in the scientific community to raise awareness for these and other rare disorders. Elsevier’s Zebra campaign ensures that every disease, disorder, symptom and person matters in this world.

I am proud of the role and partnership Elsevier has with top researchers and clinicians from around the world, who provide breakthrough, cutting edge research that impacts diagnoses and treatments of everyday patients like my daughter.

Samantha (Photo © Krysten Ashlay Photography)

Samantha (Photo © Krysten Ashlay Photography)

The Year of the Zebra initiative was launched to spotlight rare diseases and help educate current and future healthcare professionals, caregivers, researchers, patients, family members, and the general public.

Learn about the Year of the Zebra(在新的选项卡/窗口中打开)

Joslyn and her daughter, Samantha

Joslyn and her daughter, Samantha

“I truly see the impact Elsevier has …”

I truly see the impact Elsevier has especially on its employees, providing us opportunities to volunteer in the community, creating meaningful inclusive networks, and fostering an environment of growth both professionally and personally.

Samantha is now in fifth grade, and I'm delighted that she is now in remission and continuing to strengthen everyday — recently earning her second-degree black belt in Tae Kwon Do.

Elsevier has not just given me a job or a career but a life with purpose.

Resources for patients and caregivers

To support patients and caregivers, Elsevier Health is making the latest research on these rare disorders available upon request at no cost.

撰稿人

Joslyn Chaiprasert-Paguio

JC

Joslyn Chaiprasert-Paguio

Senior Acquisitions Editor

Elsevier