我們在罕見疾病領域的旅程，為我在Elsevier的工作賦予更多意義
2023年7月21日
Joslyn Chaiprasert-Paguio
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(打開新的分頁／視窗), 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(打開新的分頁／視窗) — 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(打開新的分頁／視窗): The Year of the Zebra(打開新的分頁／視窗) 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)
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.
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.
貢獻者
JC