My Friends Make Duchenne Muscular Dystrophy Manageable
I see my friends as an integral part of fueling the drive I have to face the tribulations of Duchenne muscular dystrophy (DMD).
Social Workers
COVID-19 Presents a Low Risk for Most Children With Cystic Fibrosis
Children with cystic fibrosis are at relatively low risk of serious complications from COVID-19, a study sponsored by the Cystic Fibrosis Foundation found.
An Interview With Cystic Fibrosis Foundation VP Albert Faro
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Albert Faro, MD, VP for clinical affairs at the Cystic Fibrosis Foundation (CFF).
The Mother of a Son With ALGS Knows Well the Burden of Self-Education
As the mother of a child with Alagille syndrome (ALGS), being the primary caretaker became overwhelming quickly.
Children With Pompe Disease Exhibit a Variety of Psychosocial Needs
We explore the various psychosocial needs of children with Pompe disease and discuss how we can better address those needs.
My Tale of Finding a Mental Health Professional as a DMD Patient
Having a disease like Duchenne muscular dystrophy (DMD) made just searching for a therapist I was comfortable speaking with another quandary.
New Studies: Multiple Sclerosis Patients Need Social Support
Due to the complex and unpredictable nature of multiple sclerosis (MS), health care providers should address the psychological and emotional needs of their patients with MS, according to a study published in the Journal of Neurology. The emotional issues that patients with MS experience are often overlooked, according to a survey of over 3000 MS…
Helping Young Gist Patients Avoid Addiction, Persecution Along the Patient Journey
Being diagnosed with gastrointestinal stromal tumor (GIST) cancer can be challenging for many reasons. One of those being it is an “invisible” illness. When people hear “cancer,” they think of a bald, skinny, sick, helpless person, which in many cases is far from what it actually looks like. Many of my cancer friends actually gained…
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