Matthew Spaur has published a new memoir, “Making a Small Fortune,” the story of caring for two family members with hereditary coproporphyria (HCP) while he ran a newspaper.
At the start of the 21st century, Matthew remarried and started a weekly newspaper with his new wife, Connye. Soon, Wall St.’s tech stock bubble burst, launching a recession. Then, the 9/11 attacks exploded, making business worse.
At home shortly after 9/11, Connye predicted the return of a mysterious disease that had plagued her for several years. She left their newspaper for less stressful work, but by the end of the year, she was on disability insurance. She was just 35 but experienced extreme pain and nausea and needed a walker to get around.
Still, she was determined to find an accurate diagnosis.
Unlike most specialists they saw, a rheumatologist shared their determination to diagnose Connye’s mysterious illness. After exploring several other theories, the rheumatologist recommended lab tests for porphyria. Connye’s test results confirmed a diagnosis of HCP. In another six months, her teenaged son was also diagnosed with HCP.
Matthew found that starting a small business is one of the hardest and most important jobs around—until you become a caregiver for people with porphyria.
Buy a book and donate to APF
Matthew is donating $5 for each of the first 200 copies of his book purchased by friends of APF. You can purchase his book through Amazon, Barnes & Noble, BookBaby, BookShop, and many other outlets. Or ask your local independent bookstore. Simply email any proof of purchase for printed, electronic, or audio versions of the book to general@porphyriafoundation.org to have your purchase counted towards the donation. Thank you.