Hemachromatosis, a disease that causes an inexplicable ejection of blood that can save lives.

Blood is a very valuable commodity that can save lives.. However, not all of it is used and, even more seriously, some of the high quality is lost. This is what happens to the blood of patients hemochromatosis, a group of pathologies of genetic origin caused by excess iron in the body which is celebrating its World Week from today with the aim of raising awareness of its existence.

In particular, “it is estimated that In our country, every thousand people are predisposed to hemochromatosis.but the reality is that clinically it affects one in ten thousand,” says Dr. Albert AltesPresident of the Catalan Society of Hematology and Hemotherapy, founder and current vice-president Spanish Association of Hemochromatosis (AEH)which in 2024 celebrates 25 years since its founding.

Although, according to Altes, it is “a very simple disease because it a genetic change that overloads the body with irona problem that can be solved by extracting red blood cells through “bleeding” or phlebotomy, In our country, very serious mistakes are made both in diagnosis and in treatment.

“, condemns the expert, who regrets that “this could be eliminated if screening and an appropriate approach were carried out.”

And as an example, a button or several, since, as Altes lists, with this disease numerous mistakes are made. “Hemochromatosis has a double problem; on the one hand, to be infrequent and, on the other hand, they seem very simple diseasewhich allows doctors in general to feel capable of completing the entire process without having to go to someone more specialized,” criticizes Altes, who believes that “Approximately 60% of patients who come to me with a diagnosis of hemochromatosis in the affected unit do not actually have this disease., which also affects families since it is a genetic pathology and its entire environment is studied. The reason for this serious diagnostic error is that “there are mutations described in hemochromatosis that we already know are not significant, but many doctors include them as a factor when high ferritin is also present,” Altes explains.

Another problem is that bleeding rhythm planned at initial diagnosis in order to lower iron, since many doctors believe that taking blood once a week is dangerous, and extend it to once a month, despite the fact that the sooner iron is lowered, the less damage its accumulation will cause to organs,” – he clarifies. And inability to manage the disease from a dietary point of view“This is something very serious when it is done in children or adolescents whose consumption of staple foods is limited while they are growing,” laments the expert.

However, the most inexplicable problem for Altes is that “blood taken from these patients is discarded, because according to the law in Spain, men can only donate blood four times a year, and women three. And all the bloodletting they do in the hospital is thrown away, Although this blood has no contraindications. On the contrary, we know that it is better because it is updated more. It’s something strange“, the hematologist condemns. In this sense, “it is not entirely clear that at best only four blood draws for men and three for women can be done at a blood donation center and therefore used to save blood.” lives if there are no excluding pathologies, and the remaining phlebotomies must be performed in hospitals and are not used. For the patient, and, I think, for any person, this is very surprising,” he laments. Juan Bedmarpatient and current president of AEH.

What patients ask for

But this is not the only complaint of people with hemochromatosis, since “Patients demand treatment in expert departments, since diagnostic errors are still made. Almost 85% of people with this disease have osteoarticular manifestations that are usually not treated properly.. And they complain that not all the blood taken for donation is used, although in most cases there is no technical, scientific or medical reason for this. That’s why, We want to not be discriminated against because of our genetic condition and recognize the right to donate so that our blood can be used to benefit others.

unless there are medical reasons preventing it,” says Bedmar. Given this, the arguments used by patients are compelling: “It is critical that legislatures review and change laws regarding blood donation so that we can donate blood more often than other donors. And at the same time, it is necessary to clarify that the benefits for one’s own health do not contradict voluntary and altruistic donation,” Bedmar insists.

Keep raising your voice in context World Hemochromatosis Weeknext On Friday, June 7, the main buildings throughout the geography of our country will be illuminated. remind citizens and political authorities of the existence of this disease.