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The AAMDSIF PNH Patient Travel Assistance Fund is available to U.S.-based PNH patients for up to $800 in travel assistance per patient, per year, to see a PNH specialist or get a second opinion from a PNH specialist. Grantees will be permitted to travel with one companion utilizing funds from the grant. Grants will be awarded based on the thorough completion of the required application form and the submission of all required documentation.
I sat quietly in the oncologist oncologist: (on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer. ’s office.
Texas native John Vasquez led an active life until he started to experience unusual symptoms in 2015, including an incidence of numbness on one side of his body.
In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed.
I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus. I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age).
In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders.
On April 15, 2007, my husband Jeff, age 39, tucked our two and three year old boys into bed. He suddenly yelled down to me in a concerned voice, “Honey, my vision is slightly distorted, and it must be a migraine. I’m going to lay down for a bit.”
Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin.
“I was having a pretty awesome year. I was very well known at school and I had a boyfriend.” She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.
Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia.