Tag: mds
-
Caregiver Life 101
“Take care of yourself.” It’s the first thing people say when they find out you’re a caregiver—and quite honestly, it’s the last thing they help you understand. When my husband Dexter was diagnosed in 2019 with Fanconi Anemia, a rare and complicated genetic disorder that predisposes individuals to multiple types of cancer, I was thrown…
-
Understanding Fanconi Anemia: A Rare Genetic Disorder
Fanconi Anemia (FA) is a rare genetic disorder that affects the body’s ability to repair damaged DNA, leading to a host of serious health complications. It’s most commonly inherited and can be passed down if both parents carry a defective gene related to FA. The disease primarily targets the bone marrow, resulting in decreased production…
-
Rare to Rare: Caregiving for a Rare as a Rare
Being a caregiver is a challenging role, but when you’re balancing your own chronic illness while caring for a spouse with another rare disease, the challenges intensify. I live with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that leads to chronic pain and physical limitations, while my husband, Dexter, has Fanconi Anemia (FA), a…
-
Thinking About Moving to Georgia? You Might Want to Think Twice!
Today’s post takes a detour from my usual topics, but it’s an issue that weighs heavily on my heart: the crumbling state of Georgia’s healthcare system and its devastating impact on those of us with rare diseases. Living with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder, means constantly navigating a complex web of medical…
-
Finding Solace in Art: My Journey Between Georgia and Manhattan
Since 2020, my life has been a whirlwind of trips between Georgia and Manhattan. My husband, diagnosed with Fanconi Anemia, reached the point of aggressive leukemia, necessitating a life-saving bone marrow transplant. This relentless journey turned Manhattan into our home away from home, a city that became familiar yet challenging with its bustling streets and…
-
The Healing Power of Art: A Caregiver’s Perspective
As a caregiver, I have witnessed firsthand the profound impact that art can have on mental health and well-being. The daily challenges of caring for loved ones, whether human or furry, can be overwhelming, leaving little room for self-care and emotional expression. That’s why the rising recognition of art therapy as a powerful tool for…
-
Is it Leukemia or Fanconi Anemia?
While I am hoping that my friend Allison does not mind me sharing a photo of this lovely mug that she sent me. I will say that she has been a real Godsend to me with her blog and her wise counsel as well as her heart for helping caregivers deal with patients with rare…
Country Girl Gone City 