Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Poppy

Poppy and her sister are lively happy little girls.  At this stage outwardly Poppy does not appear to be affected by her condition, however, as she gets older it will have more impact. 

Poppy has Marfan syndrome.  Her sister has not been tested for the condition as yet but she will undergo test in the future.

Poppy’s father was diagnosed at 14 after his gran passed away.  Several members of his immediatefamily were also diagnosed.  Marfan syndrome is an inherited disorder of the body's connective tissues – a group of tissues that maintain the structure of the body and support internal organs and other tissues.

Typical characteristics of the syndrome include being tall, abnormally long and slender limbs, fingers, and toes, heart defects and lens dislocation.  As the symptoms of Marfan syndrome don't always develop during childhood, it may not be identified until the teenage years.

Rare diseases are not always obvious from birth and as such it is important to be aware that 1 in 17 people will be affected by rare disease at some point in their life. 

The aim of the Rare Project is to highlight just how many different conditions there are out there and they affect people differently. 

You can meet more people who are taking part in the rare project by clicking here.