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Caregiving Basics

The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.

Education

Diseases like aplastic anemia, MDS, and PNH are rare and difficult to understand.  Patients who learn about their condition can take an active role in their treatment by asking good questions of their medical team and advocating for their own needs

Paroxysmal Nocturnal Hemoglobinuria (PNH)

PNH, or Paroxysmal nocturnal hemoglobinuria is an ultra-rare bone marrow failure disease in which red blood cells break apart. Normal red blood cells have a shield of proteins that protect them from coming under attack by the body's own immune system. PNH occurs because that protein shield is missing. PNH is often associated with reduced bone marrow function (low blood counts) caused by aplastic anemia.

MDS Types

MDS classification systems divide MDS into subtypes based on the results of blood and bone marrow tests. Scoring systems such as IPSS and IPSS-R have been developed to determine the severity of the MDS, probable survival term, and the risk of MDS developing into

“Mom, it’s too late. I’m dying.”

Person's Name: 
Jake Sanborn

My husband Rick and I knew Jake was not feeling well. He kept denying it and saying he was fine. A bloody nose scared me, and then I remembered how my brother-in-law had them as a child and thought it was hereditary. Then his high school said he had another. He began to ask us if he looked pale. We said that he did. He also was coughing and seemed lethargic. We encouraged him to go to the doctor, but he said he was fine.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)