Nominate someone for the 5th Annual Bridge Award who has made a critical difference by fostering relationships, communicating proactively, or addressing barriers to care for people with cancer and mental illness and their caregivers.
Across the nation, people are gearing up for summer and looking forward to enjoying beaches, swimming, boating and golf in the warm sunshine. But what if you could never go outside and enjoy the sun? For some individuals with the rare disease known as erythropoietic protoporphyria (EPP), this is a reality.
Traditionally, those who are diagnosed with EPP have had limited care and treatment options, however, Mass General has now opened the Mass General Cancer Center Porphyria Center, the first of its kind in New England.
EPP is one type of porphyria, a group of genetic disorders affecting the biosynthesis of heme – a molecule critical to the formation of hemoglobin and red blood cells. Patients with certain types of porphyria can have life-threatening and debilitating symptoms, including extreme sun sensitivity, intractable abdominal pain, seizures, kidney and liver failure.
“We are thrilled to see patients’ enthusiasm for our clinic,” says Rebecca Karp Leaf, MD, who serves as the center’s co-director, along with Amy Dickey, MD, MSc and Sarina Elmariah, MD, PhD. “Prior to our opening, many people had been traveling out of state and some internationally for treatment. Our patients have such incredible positive energy—it is a pleasure to care for them.”
While all of the clinic’s clinicians are thrilled about the new center, perhaps no one is more excited than Dickey—who herself has had the disease for many years.
“Because I have erythropoietic protoporphyria, other patients with porphyria feel like my family,” she says. “There’s a shared experience that’s difficult to put into words. When facing the medical system, I know firsthand the struggle that porphyria patients face, including misunderstanding, dismissals, incorrect preconceived notions and fractured care. I’m overjoyed to now be able to offer porphyria patients both comprehensive porphyria care and effective therapies. It’s been a long time coming.”
- Sep | 14 | 2021
View frequently asked questions and guidance about the COVID-19 vaccine for Cancer Center patients.
- Sep | 7 | 2021
In this interview, Kerry Reynolds, MD chats with Leeann Burton, MD, a neuromuscular neurologist at Mass General who specializes in patients with neurological immune-related adverse events.
- Staff Story
- Sep | 6 | 2021
Congratulations to Nilvie Perez, patient scheduler at Mass General Cancer Center, for being named WEEI Sports Radio Network' Everyday Amazing Healthcare Professional of this week's Boston Red Sox games.
- Press Release
- Sep | 2 | 2021
Immune cells in some human colorectal tumors congregate in clusters, scientists report in Cell.
- Staff Story
- Aug | 30 | 2021
Congratulations to Yuan Zhou, nurse practitioner at Mass General Cancer Center, for being named WEEI Sports Radio Network' Everyday Amazing Healthcare Professional of this week's Boston Red Sox games.