Hello, I am Carmen,  My illness is Idiopathic Pulmonary Haemosiderosis, a disease of  the lung causing unknown pulmonary hemorrhaging.  I am 47 years old and I live in Spain.  I was diagnosed with this illness in 1985 at 21 years of age, although I’ve had it since I was born.  In my blogs I explain my life path and hope that it will be of use to help others with the same disease. 

Hola; soy Carmen, mi enfermedad es Hemosiderosis Pulmonar Idiopática. Vivo en España, ten 47 años, fui diagnosticada de la enfermedad en el año 1985 con sóo 21 añitos, aunque la tengo desde que nací. En mis blogs explico toda la trayectoria de mi vida. podeis utilizarlo para ayudar a otras personas que como yo padezcan está enfermedad. Gracias por divulgarlo.

R.A.R.E Project Editor: We were delighted to receive Carmen’s story, and although it was in Spanish – we translated her e-mail for our English-speaking readers.  Thank you to Megan O’Donnell, one of our R.A.R.E. Project volunteers, who also took the time to translate Carmen’s video below.  

Carmen’s Blogs:

Carmen’s Obolog
Carmen’s Blogspot
Carmen’s WordPress

[youtube https://www.youtube.com/watch?v=ni3ePHRzRAw]
Video Translation:
Carmen begins by telling the physician there are very few cases in Spain, so few that she is not aware of anyone else with her condition.
The Television Host asks what rare illness Carmen has and the physician responds that it is Idiopathic Pulmonary Haemosiderosis and because it is so uncommon, it is not very well understood.  The physician proceeds to discuss the symptom of iron that accumulates in the lungs, which breaks up the small capillaries in the lungs resulting in a build-up of blood in the lungs.  One of the symptoms of this result is that the person “spits up the blood”.
Carmen adds that this has happened to her.  The physician further discusses how the blood moves to the part of the lungs with the air and it causes the person to cough – which of course, when this happens, an individual would become quite fearful of this.  Carmen nods and responds, “I was so very little, I don’t remember and now it is just part of life, I am accustomed to it.”
The physician further explains they are unaware of the cause, or whether it is congenital – they just don’t know.
Carmen explains that she gets treatments when she goes into a medical crisis and receives medical treatment two times per day in order to get the mucous/blood from her lungs.
Carmen says she lives a normal life in spite of her diagnosis and she simply needs to make sure she takes care of her lungs, of which she does through exercise.

2 thoughts on “Raising Awareness in Spain for Idiopathic Pulmonary Haemosiderosis”

  1. Prudence says:

    Thanks so much for sharing this article. My daughter was diagnosed 7 years ago, and all the doctor’s reports were gloom and doom.You are an inspiration Carmen.

  2. Jessica says:

    Hello! Im so glad i found this page. I have just been diagnosed with idiopathic pulmonary hemosiderosis and like Carmen I may be the only one in Sweden with this desease. Im 44, I am probably born with it but i didnt get any symtoms until 8 years ago: anemia, cough, shortness of breath. Last nov i coughed a lot of blood and thats how the doctors finally understood what was wrong with me. May 2015 I was diagnosed after having to undergo a broncoscopi to take samples from my lungs wich confirmed the diagnos.

Comments are closed.