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International PKU Day – 28 June

What is Phenylketonuria (PKU)?

PKU is an inherited disorder, caused by a faulty gene. People with PKU are born with a deficiency of a liver enzyme called phenylalanine hydroxylase (PAH). PAH is needed to process an amino acid called phenylalanine (Phe), found in foods containing protein. (Protein is made up of around 20 separate building blocks called amino acids). High protein foods include dairy products, red meat, chicken, fish, eggs, nuts, beans and lentils.

Usually, when we eat protein, it is broken down into different amino acids and used for growth, functioning and repair of the body. Because people with PKU can’t break down phenylalanine in the usual way, it builds up in the blood and damages the brain. People with PKU need phenylalanine, but only a small amount.

People with PKU cannot break down foods containing protein in the usual way. When PKU is detected early and treated with a special diet, children are able to reach their full potential.

Finding out your child has PKU always happens suddenly and unexpectedly. The news of the diagnosis is a shock. Most parents have never heard of PKU, so receiving the diagnosis can be frightening and confusing.

All babies born in most countries in Europe are tested for PKU soon after birth, usually the second or third day. A blood sample is taken from a needle prick on the heel, and the phenylalanine level is measured. If it is high, more tests are done to confirm that the baby has PKU. As soon as the diagnosis is made, the baby is given a special formula (also called a supplement) to lower the phenylalanine to a safe level.

Maintaining the diet in childhood is essential to prevent damage to the growing brain. It is recommended that the diet is continued for life.

 

 Source: Text & Image: https://www.pkuday.org/about/

World Amyloidosis Day – 26 octobre 2022

Amyloidosis is the name for a group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. The build-up of amyloid proteins (deposits) can make it difficult for the organs and tissues to work properly.

Source: Text: google.com

Second World Amyloidosis Day

The Amyloidosis Alliance and worldwide patients organization has created an International Day of Awareness dedicated to this rare disease, with different participating countries throughout the world.
The objective of this World Amyloidosis Day is to alert the world about the diagnostic delay that patients face, which averages 4 years.
Faster diagnoses and better quality treatment can only be achieved by more widespread knowledge of the disease.
Our campaign is aimed at all: health authorities and professionals, pharmaceutical companies, scientists, associations, etc. Let’s be the link to supporting patients and their loved ones.
Source: Text: https://www.oneamyloidosisvoice.com/    Image: Journée mondiale

World Osteoporosis Day – 20 October

World Osteoporosis Day is celebrated on October 20, 2017. World Osteoporosis Day is observed annually, and launches a year-long campaign dedicated to raising global awareness of the prevention, diagnosis and treatment of osteoporosis and metabolic bone disease.

Organized by the International Osteoporosis Foundation, World Osteoporosis Day involves campaigns by national osteoporosis patient societies from around the world with activities in over 90 countries. World Osteoporosis Day was launched on 20 October 1996 by the United Kingdom’s National Osteoporosis Society and supported by the European Commission.

Osteoporosis is a progressive bone disease that is characterised by a decrease in bone mass and density and that leads to an increased risk of fracture. In osteoporosis, the bone mineral density (BMD) is reduced, bone microarchitecture deteriorates, and the amount and variety of proteins in bone are altered.

Source: Text: With material from: Wikipedia, www.cute-calendar.com   Image: Logo World Osteoporosis Day