Author Archives: Mary Chapman

Respite Care for CAD Caregivers

Providing constant care to a patient living with a chronic disorder such as cold agglutinin disease (CAD) can be taxing. At times, you will need to recharge your own body and mind. Respite care can give you the opportunity you need to rest and restore your energy. The following…

Sleep Hygiene for CAD

A good night’s sleep is essential to your physical and mental health, as well as your quality of life. Everyone can benefit from good sleep hygiene including people with cold agglutinin disease (CAD). About CAD CAD is a rare autoimmune disorder in which exposure to cold temperatures, from 32…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

About Shoshin and How It May Help CAD Patients

If you have a chronic condition such as cold agglutinin disease (CAD), a Japanese concept called shoshin could help you to change your perspective and see the world, and your disorder, in a different light. Based on Buddhism, shoshin means “beginner’s mind.” What is CAD? CAD is a rare…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Cold Agglutinin Disease and Advocacy

If you or a family member has cold agglutinin disease (CAD), you may be interested in getting involved with health advocacy efforts, which promote health and access to care. What is CAD? CAD is a rare autoimmune disorder in which exposure to cold temperatures, those between 32 to 50…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

Emotional Responses to CAD Diagnosis

After receiving a diagnosis of cold agglutinin disease (CAD), you may experience emotions that range from relief to shock. You also may go through the stages of grief, which is completely normal. The following overview may help you understand what to expect, and how to cope with any emotional responses…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…