One Drop at a Time – a Column by Shalana Jordan

Blood transfusions are a remarkable medical intervention that has saved my life more than once. When I hear someone “needs a blood transfusion,” I immediately…

Those living with rare and chronic illnesses may often hear the term “flare.” But what does it mean? A disease flare-up is a temporary escalation…

I start each day with a floor-to-ceiling view of the lake outside our house in Florida. On perfect mornings, it is still and reflects the…

Living with rare and chronic illnesses is one of the hardest things I’ve ever dealt with. Because I have five different diseases, it can be…

Living with a rare disease often means feeling unseen and alone, even when surrounded by supportive family, friends, and a medical team. While they certainly…

“How are you feeling?” Who knew a simple, well-intentioned question could stir up so many emotions? I hear it several times a week, and it…

Reflecting on my health history, I often wonder whether my past medical issues were early warning signs of a rare blood disorder or simply unrelated…

Note: This column describes the author’s own experiences with cefdinir and Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your…

Immune thrombocytopenia (ITP) is a rare, autoimmune blood disorder that causes the immune system to attack and destroy blood platelets, which are essential for…

Living with a rare disease means that each day can bring a strange new adventure. Many doctors are either surprised or perplexed when they meet…