Are You Caring for a Person with a Rare Disease?
Thirty million people in the U.S. are living with a rare disease, and an estimated 350 million world-wide. Often, it's difficult for them and their care partners to find information and support.
That was the case for me when our son, Andrew, developed a rare disease when he was 8 years old. The disease made his esophagus swell up, and he couldn't swallow solid food. The only thing he could eat was pureed soup. It took me months to find a doctor who recognized the symptoms, but fortunately, after a year of steroids and avoiding wheat and dairy, Andrew's symptoms disappeared, and he's been disease-free for 10 years. Not everyone is that lucky.
In my post this week for caregivers.com, I review a brand-new website for rare disease caregivers from the Caregiver Action Network called Caring for Rare Disease Caregivers: A Guide for Family Caregivers of Loved Ones with Rare Diseases.
Even if you are not caring for a person with a rare disease, it's worth checking out this website. It's full of information that will be useful for all care partners, including those who are caring for person with dementia.
Read more about this new website here.
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