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TESTIMONY OF ANA JIMENEZ IN HER FIGHT FOR A DIAGNOSIS

Testimonio Lucha x un Diagnóstico
Sustancias Psicoactivas

LEGAL ASPECTS REGARDING RIGHTS IN THE HEALTH SYSTEM REGARDING THE USE OF PSYCHOACTIVE SUBSTANCES

Pacientes Hematología

PATIENTS AND STUDENTS OF HEMATOLOGY - SCHOOL OF MEDICINE -
UNIVERSITY OF ANTIOQUIA

THE VITAMINS

Litamins are a group of substances that are necessary for normal cell function, growth, and development.

Vitamins are grouped into two categories:

* Fat-soluble vitamins: which are stored in the liver, fatty tissue and muscles of the body. The four fat-soluble vitamins are A, D, E, and K. These vitamins are more easily absorbed by the body in the presence of dietary fat.
* Water-soluble vitamins: that are not stored in the body. The 9 water-soluble vitamins are vitamin C and all of the B vitamins. Surpluses or excessive amounts of these vitamins leave the body through urine. They must be consumed regularly to avoid deficiencies or deficiencies in the body.

 

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Las Vitaminas
Salud en Tiempos Fiesta

HEALTH IN PARTY TIMES

Esclerosis Multiple

MULTIPLE SCLEROSIS

 

Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord (central nervous system).

 

MS is caused by damage to the myelin sheath. This sheath is the protective covering that surrounds neurons. When this nerve covering is damaged, nerve impulses slow or stop.

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Pesquisa Pacientes EH

RESEARCH OF PATIENTS WITH ORPHAN DISEASES

FOOD IN
THE PORPHYRIAS

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Alimentación Porfirias

MARIJUANA MYTHS

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Marihuana

FOUNDATIONS FOR PORFIRIAS

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Fundaciones Porfirias

SANFILIPPO SYNDROME

MPS III or SANFILIPPO SYNDROME
PRACTICAL GUIDE TO UNDERSTANDING THE DISEASE

"Mucopolysaccharidoses are rare hereditary diseases. They are disorders of lysosomal storage of mucopolysaccharides caused by genetic changes (mutations). Lysosomes are cell organelles that contain enzymes capable of hydrolyzing or breaking down large molecules such as mucopolysaccharides or glycosaminoglycans (GAGs).

Depending on the type of GAG's, the following nomenclatures will be used:

- DS: Dermatan Sulfate, - HS: Heparan Sulfate, - KS: Keratan Sulfate, - CS: Chondroitin Sulfate

 

Mucopolysaccharides are long chains of complex sugar molecules that are involved in the formation of bones, cartilage, tendons and many of the body's tissues.  ..."

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Sanfilippo
Hablemos de las Porfirias

IN THE MONTH OF THE PORFIRIAS WE ARE GOING TO TALK ABOUT THEM

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HEMOPHILIA

Background: Hemophilia is a disease of genetic origin, recessive and linked to the X chromosome; Its main clinical manifestation is hemorrhage, the degree of which depends on the level of factor viii or ix found in the plasma, usually secondary to trauma in deep-seated sites, such as joints, muscles, and the central nervous system. 

 

Objective: To present a clear and practical bibliographical review of hemophilia, where general aspects of pathophysiology, diagnosis and management are addressed, as well as new therapeutic alternatives in development for its treatment. 

Methodology: A search was carried out in the PubMed, ScienceDirect and Scielo databases, based on the keywords in Spanish and English. 32 articles were selected as the basis for the construction of this article. 

 

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La Hemolfilia

THE CAREGIVER

Caregiver burnout syndrome, as caregiver overload syndrome is commonly known, is a state of physical, emotional, and mental exhaustion that occurs in people who assume the role of caring for a loved one for a long period of time, such as in the case of caregivers of people with Alzheimer's. In this article we explain what it consists of  and we propose some strategies to prevent it.
 

Strategies to prevent caregiver overload syndrome:
1.    Knowing the disease helps to better control the situation
2.   Learn to ask for help
3.    Acknowledge and express feelings
4.    Learn strategies to manage the symptoms of the disease.          patient
5.    Dedicate time to self-care

 

Taking care of yourself is an important aspect of the range of responsibilities of the carer and for this you need to have time. In this sense, it is highly recommended that the caregiver:

1. Try to spend time talking with friends and family.
2. Maintain a healthy diet,
3. Sleep the necessary hours,
4. Get regular physical activity,
5. Practice relaxation techniques,
6. Visit the doctor timely.

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El Cuidador

PULMONARY HYPERTENSION

The increase in pressure in the arteries of the lungs produces PULMONARY HYPERTENSION. It is a disease that becomes very serious, since the blood vessels that carry blood from the heart to the lungs narrow and harden. The heart must work harder to pump blood. Over time, your heart weakens, cannot do its job and may develop heart failure.
 

What are the symptoms of pulmonary hypertension?

1. Difficulty breathing during routine activities, such as climbing a pair of shoes.       of steps
2. Tiredness
3. Chest pain
4. Fast heart rate
5. Pain in the upper right part of the abdomen
6. Lack of appetite

 

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Hipertensión Pulmonar

THE ABUSE OF PAIN RELIEFS IN CHILDREN

Abuso Analgésicos Niños

THE GLYCOGENOSES

Glycogenosis are a group of hereditary diseases that affect one of the mechanisms of energy production and storage: glycogen metabolism. They are currently classified as "rare" or "orphan" diseases, because few people suffer from them or have been diagnosed.

 

After birth, human beings get their energy from the different foods they eat in their diet. Among these energy sources, glucose is the main energy substrate, thus allowing the proper functioning of the body and maintaining adequate performance for the activities carried out during the day.

 

Although glucose is not the only source of energy, it becomes an essential substrate for the synthesis of glycogen, which is stored mainly in muscle and liver, to be used as fasting energy fuel.

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Las Glucogenosis

THE BEGINNING OF A NEW YEAR IN PATIENTS WITH PORPHYRIA

Nuevo Año con Porfiria

Pelvic Floor Workshop

Taller Piso Pélvico

Physiotherapy and Exercises
Pelvic Floor

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Fisioterapia y Ejercicios Piso Pélvico

Diagnosis of Inborn Errors of  Metabolism

Errores Innatos Metabolismo

APE OR MONKEYPOX

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Viruela del Mono

FECOER:
Colombian Federation of Orphan Diseases

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FECOER

LUZ MIREYA SANDOVAL

Testimony of a Rare Disease and a mother's fight for her son 

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Testimonio ER

NATALIA HERRERA TABLE

Bacteriologist and Clinical Laboratory Scientist, with a Master's Degree in Genetics and a PhD from the University of Göttingen Germany

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Titulos Natalia

JUANA CAMPUZANO RISE UP

Nurse, with Specialization in Senior Management and Specialization in Public Management 

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Juana C. Enfermera
Adriana Maria Soto

ADRIANA MARIA SOTO OSORIO

Systems Engineer, with Specialization in Quality Management and Specialization in Project Management 

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LINA ECHEVERRI

Dance Teacher, Degree in Dance Education
from the University of Antioquia 

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Lina Echeverri Prof. Danza

THE SANFILIPPO SYNDROME
AND MULTIPLE SCLEROSIS

The case of Esteban with San Filippo Syndrome and
Estefanía Flórez with Multiple Sclerosis 

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Último En Vivo
Sanfilippo y Esclerosis Multiple
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