In Europe only 45% of patients with angioedema are correctly diagnosed and treated.

During this weekend, have met in Seville the best European specialists of different medical specialties in allergy, internal medicine, dermatology and emergency care to share their knowledge of angioedema, a disease that can cause death and that is underdiagnosed, as has been discussed these experts. In addition, patients affected by this pathology have also attended some of these days-urgently require access to new drugs that are present in Spain since by bureaucratic fear they will not have easy access to medication and have reported that during the past two months, have felt totally helpless.


● The experts reveal that Spain has been one of those European countries that has received a grant to investigate this complex disease that has three variants and is usually confused with an allergy. European specialists have explained in these days that is necessary to train the earliest health professionals in the diagnosis and treatment of this disease are currently analyzing the genetic causes of the three subtypes (Type I, II and III).

● This condition is underdiagnosed and only 45% of patients across Europe are correctly diagnosed and treated, according to Dr. Marco said Cicardi, Head of the Unit of Internal Medicine Hospital Luigi Sacco, Italy.

● Angioedema is a serious disease that affects an estimated 1/10.000 or 1:50,000 individuals worldwide. This means only the European Union may have 75,000 people who are affected by this disease. There are many people who suffer from GAD at some point in their lives and are unaware they have it, because it usually coincides with an allergy sporadic, as there are patients who may have few episodes throughout life.

● These inflammatory episodes may occur independently or together in the glottis, face, mucous, abdomen, limbs or internal organs like the appendix or bowel. These inflammatory processes are very serious and sometimes can be confused with other allergic diseases. There are patients who have been slow to diagnose the disease twenty years and have always thought they were allergic.


Angioedema is an underdiagnosed disease and is estimated to affect one in 10,000 to 50,000 patients in Europe and USA. Currently, only 45% of people suffering from this disease in Europe are correctly diagnosed and treated, said Marco Cicardi, Head of the Unit of Internal Medicine Hospital Luigi Sacco, Italy, in a conference held during this weekend Virgen del Rocio Hospital in Seville and have participated in the great references from all over Europe in different fields as Allergology, Internal Medicine, Emergency, Dermatology and Genetics.

These specialists have also highlighted the presence of Dr. Konrad Bork, a researcher at the Department of Dermatology, University of Mainz, Dr. S. Cichon, Researcher Geneticist Genomics, Department of Brain Center, University of Bonn, Germany and Dr. H. Professor Farkas Semmelweiss University, Budapest, Hungary; all coordinators of multiple research projects on this disease and other inflammatory-based diseases.

By Spain, has highlighted the presence of Dr. Teresa Gonzalez-Quevedo Tejerina, an allergist at the Hospital Virgen del Rocío de Sevilla, who has stated that, currently in Spain, there are about 800 families diagnosed, of which 206 belong to Andalusia and has alerted his colleagues that doctors surely there are many more families without a diagnosis in our country, because this disease in some of its subtypes as in the class II and III-often mistaken for an episode of allergy time. The aim of this conference is to train all possible medical specialists in knowledge, diagnosis and treatment of this disease as hereditary angioedema is an underdiagnosed disease not uncommon, because many people who suffer and do not know that the suffer and therefore is of low prevalence, Gonzalez-Quevedo said.

This view was shared by other specialists. For his part, Dr. Mark Cicardi said Europe is ahead in the investigation of this disease thanks to European Union aid. Spain is one of ten European countries that have received EU subsidies in recent years to investigate Angioedema with Italy, Denmark, France, Germany, Norway, Poland, Switzerland and United Kingdom. Therefore, Dr. Cicardi revealed that, thanks to these aids are created in Spain hospital groups of researchers and reference in the diagnosis and treatment of this disease. In Europe we have a unique opportunity to advance in the genetic diagnosis of this disease in the U.S. and, therefore, to prevent many deaths and episodes of angioedema. And, he added, "It is necessary to train medical specialists in allergy, immunology, pulmonology, internal medicine, otolaryngology, gastrointestinal specialists and nephrology at the correct diagnosis of this disease, because many bodies may be affected sporadically and not angioedema necessarily have to be present at all, said the Italian internist.

Dr. Gonzalez-Quevedo Tejerina Seville, said that in severe cases the disease can trigger critical tables to ignite the glottis, pharynx, or certain parts of the respiratory system can potentially have a fatal outcome for the patient. Fortunately, we have the good fortune to be able to diagnose this disease with new genetic markers and dealing with new treatments. Diagnose addition we need access to more training on the different therapeutic options with which we have and when to apply depending on the type of patient and emerging new scientific advances that help us to better therapeutic targets, reiterated this Doctor of the Hospital Virgen del Rocio.


As pointed out by Dr. Sven Cichon, Assistant Professor of Human Genetics at the Institute of Human Genetics at the Life and Brain Center, University of Bonn, Germany, one of the reasons for this underdiagnosis has been the difficulty of the when classifying subtypes within the disease, since there are three types of hereditary angioedema. Hereditary angioedema type I, type II hereditary angioedema and hereditary angioedema type III. For this doctor, patients with type I, presented in its analytical shortcomings in the protein called C1 inhibitor estarasa and also observed a mutation on chromosome 11. In the class II Angioedema, C1 levels inhibor are correct, but this enzyme does not perform its function properly and is usually observed a mutation on chromosome 12. Finally, the angioedema type III, C1 inhibitor levels are normal, and the rest of the chromosomes without mutations occur, but it is believed that this subtype III is hormone-dependent, ie it is related to estrogen level in the patient and specifically in this subclass, the German experts in genetics, are perhaps studying a possible mutation on chromosome 5 in this subtype.

Self-care information program

Anyway, in the three types of angioedema disease can be fatal in some of the episodes and it is necessary to diagnose it early and take preventive measures to prevent such crises and involving patients in self-management programs that do not live with panic, pinpointed all the experts present.

In the words of Dr. Gonzalez-Quevedo, the type III hereditary angioedema are the most difficult to classify and are often confused with a specific allergy to a substance. Therefore, any person who has suffered an episode of angioedema in their life should ask to be carried out appropriate tests to rule out suffering any of the three existing types of hereditary angioedema and participate as far as possible in their self-serving a series of recommendations to prevent one of these attacks, said the doctor.

Affected patients speak

Commenting on the magic word self-care, some patients suffering from these ailments value expressed their opinion in open to specialists. We are afraid of not having the medication on time, since we know that the EMEA has approved new drugs but in some hospitals in Spain, for various reasons, still do not. Then, "We are afraid of suffering a serious crisis and we can not treat. Faced with a serious crisis of angioedema we only have two drugs, one of them is alien to medicine that involves red tape and the other, Firazyr is not yet in many hospitals. I was not prepared to live in fear and before I decided to get my personal situation in Germany and now I'm much calmer, said Mercedes Blanco, patients with this condition.

Given these statements, Dr. Teresa Gonzalez-Quevedo and Dr. Stefan Cimbollek, both members of the Department of Allergology Hospital Virgen del Rocío explained to patients who expected this situation will be normalized since May, hope that very soon our Departments hospital pharmacy help us process all necessary steps to have all the resources possible battery which already exist in Spain to deal a serious crisis in patients with hereditary angioedema, argued these doctors.

As noted by the team of Angioedema in Italy, this new active ingredient, Icatibant acetate will be presented as a prefilled syringe and represents a revolution in the fast approach to this condition, because being a synthetic substance reduces the risks, as such as infections, involving far plasma derivatives injected intravenously. This is a simple subcutaneous injection under the skin-much easier to make and early relief of symptoms occurs in a median time of 48 minutes, which will revolutionize patient self-care, said Cicardi.


Then the group of patients from Andalusia in relation to these statements by experts, proposed the idea of creating a group of self-care of patients with allergies belonging exclusively to the zone of Andalucía. Idea which was warmly welcomed by most of the specialists who were present and which inspired a new political issue as to the responsibilities of each community and government aid to deliver only the entities belonging to their community, rather than give them to the national office. I do not agree that local groups are created on this disease, because we must be together in one country, and it seems unfair that just because we divide the given economic aid each Autonomous Community. If we are divided we lose strength because each pull to one side as is already happening at other levels in Spain, said Sara Smith, President of the Spanish Association of Patients with Hereditary Angioedema Familiar.