For Caregivers

Caregiving for Someone With EHE

Caregivers are often called the "invisible patients." As a caregiver, you may be the one managing the calendar of scans and specialist appointments, tracking symptoms, learning medical terminology, coordinating with care teams, and staying strong for the person you love – all while managing your own job, responsibilities, and life.

Because EHE is so rare, caregivers are doing this without the benefit of a well-worn path: there's no large community of people who have been where you are, and even health care providers may be encountering EHE for the first time alongside you and the person you are caring for.

That makes your role as an advocate more vital, and possibly more demanding. The EHE Foundation wants people with EHE and their care partners to have accurate information, more research, and a community that understands the specific weight of an ultra-rare cancer diagnosis.

The real challenges caregivers face

According to Help for Cancer Caregivers, a collaboration between CancerCare and Caregiver Action Network, cancer caregiving takes a toll across several parts of life:

• Emotionally, caregivers commonly experience loneliness and isolation, fear and uncertainty about what's ahead, anxiety, anger, and burnout, and are at increased risk of depression as the stress continues over time.
• Physically, the demands of caregiving often lead to fatigue, sleep problems, and a tendency to put your own health last. This may look like skipping your own doctor's appointments, exercise, and healthy meals because there simply isn't time.
• In practice, caregivers may juggle a broad range of tasks, including transportation to frequent appointments, medication management, financial strain from treatment costs, and the ongoing challenge of balancing caregiving with work and other daily obligations.