Category: Living With Gaucher Disease

5 Exercises for Building Emotional Resilience for You and Your Child

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 »

The Importance of Self-Care Amid COVID-19: Coping With Stress in the Time of COVID-19

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 »

Gaucher Disease and Myeloma: What Patients and Families Should Know

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 »

Gaucher Disease: How Peer Support and Empowerment Can Help

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 »

[MEDTalks Video] Managing Bone Health

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 »

Tackling Mental Health Challenges Within the Gaucher Disease Community

Unlike other health problems, which may only affect one specific part of the body, mental health issues have the potential to impact a person’s entire life. From social well-being to emotional response, your mental health directly impacts your mood, behavior, and patterns of thinking. Mental Health and Chronic Diseases According to the World Health Organization,… Read More »

Bone Disease, An Often-Overlooked Complication of Gaucher Disease

The more we learn about Gaucher disease, the more we understand how it affects complex cellular interactions among various body systems. As familiarity with Gaucher disease grows, more people recognize the hallmark symptoms of this disorder, such as spleen and liver enlargement and problems with certain blood components. But difficult-to-treat bone disorders are also common… Read More »

[Webinar] Parenting Adolescents with Gaucher Disease

On October 8, the National Gaucher Foundation hosted a webinar featuring Laurie Bailey, Clinical Research Manager at Cincinnati Children’s Hospital. You can watch the recording below. Toolkit Presentation Slides Transitions Growing and Managing Your Own Healthcare: What Every Teen Living with an LSD Needs to Know to Manage Their Healthcare – Dawn Laney, MS American… Read More »

Meet Our Ambassadors

In 2018, the National Gaucher Foundation announced its first Ambassador cohort. Meet the elite group below — and read their stories. We asked…”What inspires you to live a better today?” Kelly Burns Rhode Island “Choosing what I love, and what inspires me to live a better today, is family. Family has been behind a lot… Read More »

Drug Pricing, a Complex Issue Affecting the Rare Disease Community

Orphan drugs are expensive, and recent changes to the Orphan Drug Act may up the price even more. Find out how to take action and make your voice heard.

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