1% of the world’s population suffers from hyperthyroidism, 4% of the Romanian population has thyroid nodules, and 5 out of 100 thyroid nodules are cancerous. More than 50,000 new cases of thyroid cancer are diagnosed in Europe each year, mostly in young women, and 6 in 10 adults and 1 in 3 children are overweight or obese. ENDO Patients – Association of Endocrine Patients, the first organization dedicated to patients with endocrine disorders in Romania, was officially launched today under the auspices of the Romanian Senate Health Commission.

ENDO Patients is the first organization dedicated to patients with endocrine diseases in Romania, which aims to campaign for the rights and needs of patients with such diseases, and to participate in the education of the general public on the awareness of endocrine diseases.

The association has three founding members, all three of whom are journalists with over 20 years of experience: Adriana Turea (journalist for Radio Romania Actualitatea), Dana Laska (journalist for Euronews Romania) and Aleksandar Maneila (journalist for Videomedicina.ro).

Adriana Turea, President of ENDO Patients, Radio Romania Actualità journalist specializing in health issues, suffers from an endocrine disorder, so she understands very well the needs of Romanians with these diseases: “In my case, the affected gland is the thyroid gland. Around the age of 19, I found out that I had two nodules on the thyroid gland, which did not require treatment, but required periodic examinations, which I did not attend. I was fine. After about 30 years, a lump began to appear on the neck. I kept thinking about where to apply until I decided to go to the Research Institute of Endocrinology “Ch. I. Parkhon”. After about 6 months of regular check-ups, I had surgery. The entire thyroid gland was removed because doctors found more nodules than were visible on the ultrasound, some of which were in the back of the thyroid gland. And microcarcinoma was discovered during the biopsy. I was also lucky because it was so small that no radioactive iodine treatment was needed. It’s important to have regular checkups and pay attention to what the doctors tell us.” – Adriana Turea

“The main need of endocrine patients is to be treated in a multidisciplinary team and to understand what happens in their body when the endocrine gland stops functioning as it was programmed by nature. To better educate endocrine patients, we will be organizing events, webinars and support groups that will also include doctors who empathize with patients’ suffering. At the same time, we will organize seminars and conferences/press events that will focus on patients’ needs, information and rights,” says Adriana Turea, president of ENDO Patients.

Since its foundation, the ENDO Patients Association has aimed to draw the attention of the general public, as well as patients and their relatives, respectively, family members, to two topics of great interest and relevance: “Adolescent female health ” and menopause” and “Obesity is a chronic disease, not just a risk factor”.

Alexandru Rafila talks about an action program for patients with endocrine diseases based on the cerebrovascular disease strategy model

“Perhaps we will try to hold some discussions together with the specialized commission of the Ministry of Health and, of course, together with the professional societies operating in the field to see if we can together make an action program, as in the field of “cerebrovascular disease strategy and policy development in this field”, said the Minister of Health Alexandru Rafila during the opening of the ENDO Patient Association.

“In Romania, about 4 million people suffer from obesity. Unfortunately, by 2035, from 21-22%, the prevalence will reach 35%, and perhaps most alarming is the increase in the annual incidence of children, especially men. And at least in terms of obesity, we are really in the first places in Europe. It is a disease with a multifactorial etiology in which there is an imbalance between what is called energy consumption and consumption, this energy balance is regulated at the level of the central nervous system based on some afferents that come from the periphery, from adipose tissue. tissues, to the level of the intestinal tract, but genetic predisposition is also important, drug consumption is important, lifestyle influences, and last but not least, the hedonic component, that is, the pleasure that we must admit sometimes gives us, so to speak, the control of certain foods. Like any chronic disease, it is accompanied by complications, and if we classify them, they are almost the most serious: metabolic, cardiovascular, hypertension, dyslipidemia, risk of pulmonary thromboembolism, risk of heart failure or cerebral stroke. If we talk strictly about metabolism, we cannot fail to mention the risk of pre-diabetes or type 2 diabetes, especially either the risk of gout or the risk of chronic non-alcoholic liver disease, polycystic ovary syndrome and infertility and the risk of cancer.” – Prof. dr. Cătălina Poiană, primary endocrinologist, president of the Bucharest College of Physicians and vice-rector of UMF “Carol Davila”.

“Specifically, in the current strategy, the role of an active team in the provision of medical/support services, as well as in the modeling of specific health care policies belongs to patient associations, grassroots organizations in providing a unique perspective on the perceived needs of patients, their preferences, satisfaction and quality of life of patients , affected by certain diseases. I welcome the creation of ENDO Patients – Association of Endocrine Patients, a bold initiative given the interdisciplinary/multidisciplinary nature and complexity of the field of endocrinology. I consider it important to actively involve him in future pilot/implementation projects for NHS actions such as contributing to the development of the endocrine patient pathway, mapping the resources available in different territorial areas for the main endocrine diseases, introducing the concept of clinical case management and participating in the adaptation of specific guidelines /disease-specific guidelines for patients/the general public” – Dr. Adrian Pane – Public Health Specialist – Coordinator of the National Health Strategy 2023-2030 Development Process.

“It is a great honor for me to be able to participate in the launch of this association, an association that wants to support and make a social contribution to patients with endocrine diseases, a very complex pathology where we know that, unfortunately, we have a very high indicator in Romania, therefore, I believe we are at the beginning of a journey that will undoubtedly improve what education, awareness and understanding of endocrine diseases means,” Radu Ganescu, president of the Coalition of Chronic Disease Patient Organizations.

“Looking at the whole, the patient has several needs, and the overall assessment is related to the quality of life. This means that, in addition to the fact that he adheres to the treatment of a specific disease, he has numerous needs that can be completed by a whole series of additional therapies that do not replace the main treatment, but complete the response of the patient’s body. These two types of treatment, classical and complementary, will be found to improve his quality of life, offering him a state of well-being and, in most cases, increasing his adherence to punctual treatment directed at the specific condition. Examples of additional therapy are hyperbaric therapy, therapy with a mixture of oxygen and ozone, in both cases oxygen is, moreover, the most important nutrient for the emergence and maintenance of life”, – Dr. Mihai Baikan, specialist in regenerative and restorative medicine.

“In Romania, obesity is a reality that the authorities prefer to hide under the press. This is evidenced by statistical data that reflect the fact that obesity is one of the conditions in which the necessary links of patient care are not provided. According to the INSP, in Romania the prevalence of obesity among adults is 10% (in 2021) and the prevalence in the general population will be below 2% (first quarter of 2023). Yet population-based studies show very different numbers, with prevalences ranging from 20% (ORO study) to 30% (PREDATORR study). The FABC caravan found some pretty dramatic numbers: 74.73% of subjects were overweight or obese,” said Dr. Daciana Toma, vice president of the National Society of Family Medicine.

“We welcome the creation of the Association of Patients with Endocrine Diseases, which will be able to popularize the voice of patients in the public space. It is extremely important to involve people affected by various pathologies in decision-making, and modern medical systems must take into account the needs and expectations of the beneficiaries of medical care. We hope that this association will also actively participate in the fight against obesity, both to increase access to medical services and interventions, and to promote preventive measures”, – Prof. Cornelia Bala, President Emeritus of the Diabetes and Obesity Education Association.

More than 50,000 new cases of thyroid cancer are diagnosed in Europe every year

Endocrine diseases in numbers:

• 1% of the world’s population affected by hyperthyroidism;

• 5 out of 100 thyroid nodules are cancerous;

• More than 50,000 new cases of thyroid cancer are diagnosed annually in Europe, mostly in young women;

• The average survival rate of neuroendocrine tumors is only 41 months;

• 5 out of 10,000 people will suffer from adrenal insufficiency;

• 6 out of 10 adults and 1 out of 3 children are overweight or obese;

• Obesity is associated with 80% of cases of type 2 diabetes;

• The prevalence of hyperthyroidism in Romania is 1-2% in women and 0.1-0.2% in men;

• 4% of the Romanian population would have thyroid nodules;

• 5% of nodes, according to doctors, may be malignant;

• The most common thyroid cancer is papillary, it covers about 70-80% of all cancer cases.

ENDO Patients – The Endocrine Patients Association invites Romanians suffering from endocrine diseases to join the association as sympathetic members. Registration will be possible starting next week on the association’s Facebook page – ENDO Patients. Registration will be free of charge and can be done online in no more than 2 minutes, as it takes to fill out the registration form.

Also, to receive advice, support or support, endocrine patients can send a request to the email address of the association [email protected] or contact the association by phone at phone number 0740.390.298.