Category: Living With Gaucher Disease

Restful sleep—the period each day when our bodies recharge and repair—is a challenge in modern life. As the pandemic has changed our routines and increased people’s stress, sleep is even more elusive. We spoke with Andrew Westwood, MD, about why sleep is important and how to sleep better. Dr. Westwood is a sleep neurologist and… Read More »

Financial literacy is a key component of self-sufficiency. For people living with Gaucher disease, as for anyone with a rare disease, significant health-related concerns come with the diagnosis. Those health concerns can impact your finances—and highlight the importance of being financially literate. To learn more about financial literacy for people with a chronic condition, we… Read More »

As of early October 2020, the world has been grappling with the novel coronavirus disease 2019 (COVID-19) pandemic for about eight months. Globally, more than 35 million cases of the coronavirus have resulted in more than 1 million deaths. In the current wave, 99% of cases are mild, while 1% of people with COVID-19 are… Read More »

In your small and large intestines—the human gut—you host trillions of microbial cells. These microorganisms make up the microbiome, the bacterial community that affects how you digest food, process nutrients, and interact with every aspect of the physical world. For everyone, but especially people living with chronic metabolic conditions like Gaucher disease, the gut microbiome… Read More »

The Patient Protection and Affordable Care Act (ACA), signed into law in 2010, significantly expanded access to health insurance in the U.S. Also known as “Obamacare” or PPACA, the ACA created health insurance exchanges where people can enroll in insurance coverage that isn’t tied to employment. The federal government operates HealthCare.gov, an exchange that currently… Read More »

In today’s overwhelming environment, it’s more important than ever to develop emotional resilience—the ability to recover from stress and anxiety. With constant device usage, adults, teens, and kids face a never-ending news cycle and pressures from social media. Add the challenges of living with a chronic condition like Gaucher disease, and developing life skills that… Read More »

Stress always exists, but at times like now, amid the coronavirus pandemic, it’s a global phenomenon. As you watch events unfold in your communities and around the world, you aren’t alone if you feel lonely, anxious, and worried. In one way or another, everyone on the planet has been affected—directly or indirectly—by COVID-19, the disease… Read More »

Two thirds of Gaucher patients have some evidence of bone disease that is directly related to the disease. Gaucher bone disease may lead to serious orthopedic complications but it is not a cancerous condition. Doctors know that a much smaller number of people with GD can develop multiple myeloma, a malignancy of bone marrow plasma… Read More »

Rare diseases can affect all aspects of a patient’s life, not just physical health. If you have Gaucher disease, it’s not just about finding a treatment that’s effective. Finding supportive resources, including peers who also live with the disease, can help you cope with your condition—and empower you to take charge of your health. Aviva… Read More »

Growth in Gaucher: Managing Bone Health Dr. Heather A. Lau, MD, MS, Assistant Professor and Director of the Lysosomal Storage Disorders Program at New York University School of Medicine, discusses managing bone health for those who have Gaucher disease with an emphasis on the impact early intervention and treatment, particularly when introduced before or during… Read More »