Newly diagnosed with paroxysmal nocturnal hemoglobinuria

[JenW]

Hello, I have been diagnosed with paroxysmal nocturnal hemoglobinuria. I am reaching out to others with this condition to get any information about this disease.

[Neil Cuadra]

JenW,

You'll find PNH patients here, at the PNH Support Group (http://www.pnhdisease.org) website, and through the Peer Support Network (https://psn.aamds.org) of the Aplastic Anemia & MDS International Foundation (http://www.aamds.org).

Are you newly diagnosed? Have you read about the basics of the disease (http://www.aamds.org/diseases/pnh) and ordered the free PNH education packet (https://www.aamds.org/patients/educational-materials)? Alexion Pharmaceuticals runs the PNHSource (http://www.pnhsource.com/patients) website, with additional information.

Have you found a doctor with PNH experience?

[GoodDay5150]

Hi Jen. I was diagnosed w/ PNH in 2011 and had a stem cell transplant abt 6 months later. I had symptoms off and on for a long time previous to that but I was never diagnosed until they became so severe that I could no longer ignore them. I had debilitating fatigue by that time, and I had a hard time doing basic tasks like work, taking care of a house, etc. My doctors and medical staff have all been great, and my experience overall has been positive. I actually just had a follow up visit a few days ago, and I am doing well. However, I do have some GVHD, I had shingles last Fall, and I get some bad colds every now and then that hang on, so there have been some issues along the way. I will be more than happy to answer any questions that you have.

Mario

[JenW]

Neil, thank you for your response. I have found a doctor with pnh experience. She has treated two other patients. I have received information packets from alexion today.
Jen

[JenW]

Mario, thank you for your reply. I was diagnosed June 15th, since then I have had a power port placed and have received 2 infusions of soliris. My next infusion is today. This is a lot to take in and even comprehend. I am sure I will have many questions for you during this journey :)
Jen

[GoodDay5150]

Hi Jen. I had a power port for post transplant procedures. I was going to get Soliris before my transplant, but that doctor changed his mind. I have told a few diff PNH experts about my transplant and they both said that they would not have transplanted me, but instead given me Soliris. One of these doctors was going to transplant a patient who also had AA, so I think that was her reasoning. AA and PNH go together in some instances, and some people will have AA that is cured by drugs and will then develop PNH later in life. Yes, it is a lot to comprehend. I sort of freaked out for a few days after my diagnosis, but I recovered quickly from that. I have quite a few posts here regarding my experiences, and it's always interesting to meet new PNH peeps bcse it is so rare, as you probably know.

Mario