Hairdressing apprentice raises awareness of Marfan syndrome

March 18, 2021

During her Level 2 Hairdressing apprenticeship with Cambridge Regional College, Plamena Rafailova experienced the sudden loss of one of her closest friends to a rare genetic condition called Marfan syndrome. The condition affects 1 in 50-100,000 and is so unheard of that those among her friends and family had never heard of it.

In light of the loss of her close friend, and the need to raise awareness of this invisible condition, Plamena and her friends set up a Just Giving page to raise funds for the charity. To encourage donations, the group of friends collectively raised £200 which they donated as a prize incentive for those supporting their cause. This has resulted in the group of friends raising almost £5000 for the Marfan Trust. On 2 April, Micah’s birthday, a winner will be selected at random from those that have donated.

Plamena said: “It has really helped me to see such kindness. People the same age as me have been donating significant sums to raise awareness of this hidden illness. It has shown me that people really cared about Micah. Following the draw, we will continue to raise awareness through further fundraising activities, such as the Cambridge Marathon this October.

“Losing Micah really gave me a different perspective, it has made me realise that it doesn’t matter what I choose to do in life, so long as I do my best on whatever path I take.”

Researching the condition, Plamena and her friends discovered that Marfan syndrome is a disorder that affects the bodies connective tissue, which provides strength and flexibility to the main structures within the body such as bones, ligaments, muscles, blood vessels and heart valves. Consequently, Marfan syndrome can affect many systems, often causing a range of abnormalities.

The abnormalities often go undetected meaning that those affected may not even know there is a problem. Individuals with Marfan syndrome are usually have characteristics such as being tall and slender, with long fingers and toes.

If you would like to find out more about Marfan Syndrome and support Plamena with raising awareness visit,