Steve Coffin considers himself lucky. Diagnosed with PNH in 2015, he is  grateful that he has responded well to eculizumab (Soliris®) treatment. “I’m incredibly fortunate,” he said. “It’s doing exactly what it’s supposed to do.”

Steve, a 34-year-old avid runner, always lived an active lifestyle, but he had also sometimes experienced unexplained issues with fatigue over the years. In February, after a bout with the flu, he woke up at four in the morning with severe abdominal pains. “Within three or four breaths, I knew I had to get to the hospital,” he states.

When I was 13 years old, I was diagnosed with severe

I was just past my 19th birthday when my family and I realized that something was severely wrong with my health. Throughout high school I was always fatigued, and bruised very easily. I also experienced what I now know as

I am the mother of 4 boys, now ages 13, 14, 18, and 20, and we live in North Dakota. We took our third son Samuel to the doctor just before Christmas of 2008 when he was 7, and it was about a month and many tests later that he was finally diagnosed with severe

“Faith, hope and endurance are imperative to living a life full of possibilities with PNH,” says Emma Pritchett, who has lived with

My journey with MDS (

My name is Yajaira and I am 24-years-old, and live in Victorville, California. It has been about two years since I was diagnosed with

On July 4th, 2014, my 23-year-old son, Jordan, coming from the Washington DC suburbs, visited us (Barnett and Nelda Brown) in La Place, Louisiana. He wasn’t feeling well, so I convinced him to go to urgent care before leaving to return home. He was given antibiotics because he appeared to have three cysts in his left arm. He made a second trip to urgent care in Virginia to have the cysts lanced and was given a blood test during the procedure.

“Walking into a

A PNH survivor for more than 25 years, Stephen King speaks about his life as a patient and an advocate in both formal and informal roles -- and offers advice for newly diagnosed PNH patients.

 “I’m an engineer with a problem-solving orientation,” says the medical software manager from Atlanta, Georgia. “After my diagnosis, I thought, now that you know what it is, let’s fix it. It took a little time to sink in that there was no quick fix, and I had to learn more about it.”

Early Diagnosis, Treatment and Emphasis on Self-Advocacy