Debbie has been living with a blood cancer, follicular lymphoma (FL), since 2011 when she was initially diagnosed during her studies in England. While living with an indolent cancer has had its challenges and can be filled with uncertainty, Debbie seeks to find joy and live every moment to the fullest.
Tag: Patient
Managing Post-Stroke Spasticity: Hub’s Story
Hub experienced a hemorrhagic stroke in 2021 as a result of bleeding in the brain. Like many stroke survivors, Hub experiences spasticity, a condition in which muscles contract uncontrollably leading to pain, stiffness and limited movement. As a father of three, Hub was determined to recover and put significant emphasis on seeking the care he needed, including spending five weeks in a rehabilitation facility.
Life with FOP: Savannah’s Story
Savannah – or Sassy Savvy as she’s known by her family – is a caring sister, a strong-willed daughter and above all else, overfilling with creativity, happiness and laughter. Savannah is also living with a rare disease, fibrodysplasia ossificans progressiva (FOP), and while it has a great impact on her life, she nor her family let it define her.
Caring for a Loved One with Metastatic Pancreatic Cancer: Nora’s Story
Nora and her husband, Hector, met 39 years ago, got married shortly after, and have been inseparable ever since. In 2021, Hector was diagnosed with metastatic pancreatic cancer, which threw their entire family into navigating a very difficult diagnosis. Nora has taken on the role of Hector’s advocate and caregiver.
Life with Primary Biliary Cholangitis: Sabrina’s Story
Sabrina is a lover of nature, mother and grandmother, whose outlook on life is to make every moment count. Sabrina lives with primary biliary cholangitis (PBC), which means every day is different depending on the severity of her symptoms, but this doesn’t stop her from doing the things she loves the most.
Understanding the true impact of living with FOP
This year marks the 17th anniversary since the discovery of the ACVR1 gene was announced, a major scientific milestone in fibrodysplasia ossificans progressiva
‘A Life in a Day’: the realities of living with FOP
I was honored to be invited to take on the challenge to live ‘A Life in a Day of a
Our pledge: summaries in plain language for all journal publications
Today, we are broadening our commitment to providing everyone with the opportunity to read and understand our research. From July