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paroxysmal nocturnal hemoglobinuria (PNH)

Long term treatment with eculizumab in paroxysmal nocturnal hemoglobinuria: sustained efficacy and improved survival.

Author(s): 
Kelly RJ, Hill A, Arnold LM, Brooksbank GL, Richards SJ, Cullen M, Mitchell LD, Cohen DR, Gregory WM, Hillmen P.
Primary Author: 
Kelly RJ
Journal Title: 
Blood
Original Publication Date: 
Apr 2011

Paroxysmal nocturnal hemoglobinuria (PNH) is an acquired clonal hematopoietic disorder with increased mortality and morbidity due to intense intravascular

Bone Marrow Disease(s): 

Loss of expression of neutrophil proteinase-3: a contributory factor in thrombotic risk in paroxysmal nocturnal hemoglobinuria.

Author(s): 
Jankowska AM, Szpurka H, Calabro M, Mohan S, Schade AE, Clemente M, Silverstein RL, Maciejewski JP
Primary Author: 
Jankowska AM
Journal Title: 
Haematologica
Original Publication Date: 
May 2011

Background: A deficiency of specific glycosylphosphatidyl inositol-anchored proteins in paroxysmal nocturnal hemoglobinuria may be responsible for most of the clinical features of this disease, but some functional consequences may be indirect. For example, the absence of certain glycosylphosphatidyl

Bone Marrow Disease(s): 

Paroxysmal nocturnal hemoglobinuria clones in severe aplastic anemia patients treated with horse anti-thymocyte globulin plus cyclosporine.

Author(s): 
Scheinberg P, Marte M, Nunez O, Young NS.
Primary Author: 
Scheinberg P
Journal Title: 
Haematologica
Original Publication Date: 
Jul 2010

BACKGROUND:

Clones of glycosylphosphatidylinositol-anchor protein-deficient cells are

Natural history of paroxysmal nocturnal hemoglobinuria clones in patients presenting as aplastic anemia.

Author(s): 
Pu JJ, Mukhina G, Wang H, Savage WJ, Brodsky RA.
Primary Author: 
Pu JJ
Journal Title: 
Eur J Haematol
Original Publication Date: 
Mar 2011

Objective:  Investigate the natural history of PNH

Patients

We understand that coming to grips with serious health news is a major challenge. But once the initial shock of a bone marrow failure diagnosis wears off, the best thing you can do is learn as much as possible about your disease. Knowledge is power, and understanding what’s happening to your body will help you remain focused and hopeful. 

Sexuality and Intimacy

Your body is fatigued from fighting a disease; you may be taking strong medication; your outlook on life has changed. For most people, it's natural for sex to take a backseat in these circumstances. Nevertheless, intimacy is a quality-of-life issue that patients can and should discuss with their doctors if it becomes a problem. It's wise for patients to be gentle with themselves and remember that there are many ways to express intimacy.   

Emotional Health

No one is prepared for the shock of learning they have a serious disease. But in the aftermath of diagnosis, patients can and do learn how to adjust to their condition. With helpful AAMDSIF resources, they can learn about their illness, build their own support system and connect with their peers. But before that happens, patients have to deal with a range of powerful emotions.  

Fatigue

Ongoing fatigue is a major issue in the lives of most bone marrow failure patients. A variety of factors contribute to this condition, and it's important for patients to recognize that it should be reported to their doctors and not overlooked as an ordinary side effect. Learn more about fatigue and what you can do about it.   

Exercise

Everyone who regularly exercises reaps the advantage of a more efficient metabolism, which effectively improves both body and mind. No one can afford to get physically rusty, but when your body is already fighting disease, it needs to muster all the strength it can. This section will help you understand why and how you should address your physical needs, but always consult with your doctor first before embarking on any exercise routine.  

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